The R-Word

This isn't what I intended to write about when I sat down this evening. I intended to write about our week vacation, Easter weekend, or the weekend we just had with my BFF and her family, but an incident this week with someone involved closely with Maddie's day-to-day life has me pretty upset. I'm more upset that I didn't say anything when it happened, but I will be talking to this person this week and needed the chance to gather my thoughts.

Words are powerful. They are meaningful. They set a scene, describe emotions, and tell a story. They can sweep someone off their feet or completely bring them to their knees. Words can be beautiful (opulent), ugly (pustule), or funny-sounding (onomatopoeia).

However, I believe there are some words used in the English language that should not be repeated. They are derogatory, demeaning, and hurtful. I believe in freedom of speech and the right to use words to express yourself, but words that shun a whole group of people to make yourself appear to be better than that group are unacceptable. The N-word, the F-word (and it's probably not the first f-word that comes to mind), and the R-word are all words on this list. 

The use of the R-word is particularly important to me, but it hasn't always been. In high school I frequently used the word. During college, someone brought to my attention how offensive the word was. I had never thought of it that way, but when it was explained to me, I began to understand and removed it from my vocabulary. But, it wasn't until Maddie was born that I truly became aware of how unjustifiable and reprehensible this word is. 

I have tried to explain to myself why I hate this word so much and why it is so hurtful for me to hear people use it. This is the best way to describe it that I can think of: When you use the word retard or retarded, in ANY context, you are essentially saying that you, or whomever you are speaking about, are SO dumb/stupid/idiotic/etc. that you are like my daughter, who will most likely have some sort of delay in her intellectual development. As if being like her would be so detestable, so deplorable, that you can't think of any other insult to describe that person or thing.

Most people will say something to the effect of, "But I would never say that word to, or in reference to, someone who had intellectual disabilities". "I was only referring to myself, so it's no big deal". Let me be clear, it does not matter what context you are using it in. You are sending a message to my daughter, by using that word, that you think she is somehow beneath you, that you are better than her, and therefore she is unworthy of the same respect that you should receive. You are telling her that the only worthy quality of a person is how smart they are and that none of her other qualities are important.

I don't know what Madelyn's intellectual abilities will be. However, what I do know is that she is a smart girl. She wants to learn and learns things she's excited about very quickly. She also has many wonderful qualities. She is funny, loving, beautiful, loves music, singing and dancing, and is a joy to be around. She enriches my life every single day and has taught me so much that I otherwise would have missed out on had she not come into my life. She is worthy of every possibility life has to offer her and does not deserve for ignorant people to flippantly demean her. When you know better, you do better. Think before you speak, words do hurt. If you hear someone use the word, let them know the word hurts. Do your part to help Spread the Word to End the Word. Choose to make Maddie's world a little less harsh, a little less hurtful. If she could talk, I know she'd do the same for you.

Loving Holland

WELCOME TO HOLLAND

by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

     I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
     When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
     After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
     "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
     But there's been a change in the flight plan. They've landed in Holland and there you must stay.
     The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
     So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
     It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
     But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
     And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
     But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I first came across this essay in a class I took at Pitt. At the time Aiden was 2 months old, and I was feeling lost, afraid, scared, and felt like being a mom was nothing like anything anyone had ever prepared me for... ever. I was still adjusting. I could related to the poem, not because I had a child with special needs, but because I felt like people were telling me that being a mom was going to be one way, and it was anything but. While I realized that I was in Italy with Aiden, there was something about the essay that stuck with me. 

A lot of things are kind of blurry after the Dr. told us about Maddie, and I'm not exactly sure who brought up the essay first, it might have been the social worker at the hospital, or Grant's mom, or the Coordinator at the Down Syndrome Center, but wherever it came from, I knew immediately what they were referring to before they even finished explaining what the essay was about. I knew that these people were bringing up the essay to help comfort us, and in Grant's mom's case, because she loves us and was trying to ease the pain. And, I appreciated the gestures. But, I was so angry that I couldn't even bring myself to reread the essay. I didn't need to, I knew what it said and I wanted nothing to do with it. I didn't want to look at all the beautiful, wonderful, amazing, and fantastic things that Holland had to offer. I wanted to be back in Italy, and I didn't want anyone referring to what I was going through to a trip. Because, the pain and devastation I felt could never compare to the disappointment you may feel about not getting to see Italy. This was deeper, harder, and more powerful than that.

It took me a few months before I was able to reread the essay. When I did, it made me feel like I wasn't so alone, but I was still angry, and I still hated Holland. That is, until Maddie started to show me all the wonders that Holland has to offer. At 7 weeks old, Maddie started rolling ... 7 weeks!! Then Maddie started smiling, and then laughing, and sitting, and inch-worming and here we are at 14 months and she's still showing me all the amazing things Holland has to offer. And, it's not just the developmental aspects of Maddie that are so amazing. There is something about that little girl that is so much more than other kids. I can't explain it, I can't put my finger on it, but she lights up the room she's in. She draws strangers to her, she captivates them. When she looks at you, she makes you feel like there's nothing in the world that she'd rather be doing than sitting there with you and studying you. She is beautiful and sensitive and sweet and had I not ever visited Holland, I never would have seen or experienced these things. There are still times that I am jealous that Maddie didn't take us back to Italy, but there are more times that I think people should be jealous of us because they won't ever visit Holland. I get the best of both worlds, Italy and Holland. People who visit Italy over and over are missing out!

These days, Maddie has been showing us more of the wonders of Holland and I'm loving it! I can't get enough of her. She thinks she's a rock star. And, frankly, so do we! But before I go into the reasons why, here's a picture of her "mad baby" face. This is the face she gave me when she realized that I had the camera in my hands. I can only imagine that she will perfect this look as a teenager, however, right now it's pretty cute and funny! I love the furrowed brow!

She quickly warmed up to the camera and gave me a happy face! Do you notice what else she's doing? That's right. She's sitting up, and she got there all by herself!! This is how I found her when I went to pick her up from her nap. I don't think she knew what I was making such a big deal over, but she was just happy that I was happy. I don't know exactly how she's doing it, because I have yet to see her in action, but I couldn't be happier!! She's done it three times since then.

Aiden was so proud of his baby sister, too, that he went and got his camera to take pictures as well.

And, as if that wasn't enough, Maddie decided four days later that she was going to pull herself into a stand. That's right... she's standing now, too! This was the 2nd time she had done it, and luckily I remembered the camera on my phone! Like sitting up on her own, she's only done this a couple of times, too. But, it's just the beginning and now that she knows she can do it herself, I have a feeling that there's nothing to stop her!

I'm excited to see what else my little tour guide has to show us, but Ms. Kingsley was right, once you adjust, catch your breath, and learn the language, you can see that Holland is beautiful and wondrous and, frankly, there's no place I'd rather be.

School Pictures

Today Aiden had his first school pictures ever taken. I have been so excited about this, imagining us years from now proudly displaying his cute preschool photo at his high school graduation open house. I imagined how it would start off the entire book of photos taken all the way through school, how he will change over the years until you can see a glimpse of what he looked like as a kid, but without the photo to prove it you wouldn't have guessed it was him. I dreamt of his cute crooked smile showing a little bit of his front two teeth, one which is pushed up further than the other from a combination of sucking his thumb and a chair falling on him when he was a baby, his huge eyes and eyelashes that seem to open the world to him, and his cute little button nose. I expected ooo-ing and ahh-ing over his sweet little pictures and trying to decide which one looked just right to send out to all our family and friends.

What I didn't expect was for his "rudiculus" (or ridiculous) faces to be captured on film digital image forever.

And that's just what happened. His teacher warned me right before she handed me the photos that he just wanted to make ridiculous faces, so they let him do that and then they had him smile for real. I want to know why I didn't get any of the smiling photos?!?

I do have to say that the upper left picture isn't a ridiculous face, but his "I'm shy and not sure what's going on" face. I love that face!! But the rest are pretty goofy, so it looks as if he didn't stay shy for too long! What a funny boy!

So, once again, my children are teaching me a lesson... don't imagine grandiose scenarios that would never come true in a million years, instead get the most outrageous picture to torture him with when he's a teenager! :) Ha ha! I love you, Stinker!

Family Fun Day

Normally, our days are spent feverishly running from one thing to the next. From the time we wake up, until the time we go to bed we are busy with school drop-off and pick-up, errands, therapies, etc. I feel like at any given moment I'm juggling 12 different things and trying to keep everything together and on schedule. This hasn't always been the case. 

When Aiden was little, we didn't have much of a schedule except for what time naps started. We had the freedom to do what we wanted, when we wanted. It was wonderful! Often times, we'd just pick up and go to the library, Zoo, Children's Museum, or just for a walk around the block. We also used to have PJ days, where we would spend the day in our PJs, ignoring everything else that needed to be done, and just play the whole day away. It was great!

With the addition of Aiden's school and Maddie's therapies and various appointments, we don't have much unscheduled free time, and the free time we do have is mostly spent playing catch-up with things we have neglected due to our schedule.

Lately, I have been feeling overwhelmed by how on-the-go our lives seem and have felt like I just can't catch-up to everything. Then, last week Maddie had an appointment at the Down Syndrome Clinic at The Children's Hospital of Pittsburgh and it was determined that we need to add Occupational Therapy into our schedule. I nearly lost it. This will be our 4th therapy every week. Don't get me wrong, I love our therapists and the work they do with Maddie. Even if it seems like we're not making much progress, I know in the end it will make a world of difference in Maddie's quality of life down the road. However, I just want those days back that I had with Aiden and I want Maddie to be able to experience them, too. I want to be able to pick up at the drop of a hat on a suddenly warm day and go to the Zoo. I want to drop in at the library just because we have nothing else to do that day. I want to wake my kids up from their naps and go on a walk because it's sunny out and we haven't seen the sun in what feels like months. I want to wake up and decide that we can put our errands off until tomorrow because what's important today is to stay in our PJs and play all day long with my babies, and that's exactly what we did today. It was heaven!!

I know all of the appointments we have for Maddie are going to give her the best possible start that she can get, but having time to be a family is also what is best, not only for Maddie, but for the rest of us as well. I know that in the coming months things are going to get pretty hectic, but you can bet that I am going to be building these fun days into our schedule from now on!

Look Who's Signing!

When Aiden was born, I was interested in learning some basic sign language to help him communicate with me. I learned a few things like "milk", "more", "eat", and "drink", however he really never needed them. Then, when Maddie was born, I decided that I was going to be more aggressive with learning sign language since there is a high likelihood that she will have some delayed speech. When she was less than 2 months old I took a Baby Sign Language class and was waiting for the readiness cues they said to look for.

She started waving "hi" and "bye" a few months ago and since then, I have been working on teaching her "all done" and "more". Well, at 11 months she nailed them, and quickly! Here are some recent videos to prove it.

A few weeks ago, during a particularly hard session of physical therapy, Maddie was getting frustrated and turned to Diane, our PT, and signed "all done" to her. It was so cute and so funny! Unfortunately, we were not "all done". At the end of the session Diane said to Maddie, "Ok, now we're all done" and she signed it again and smiled and clapped! Like, "Yes! Finally, we're done!".

And, she also loves a good game of, "How big is Maddie?" Even though I'm super proud of Maddie's "so big", my favorite part of this video is Aiden and his exasperation over trying to explain to us that Maddie is not, in fact, "so big". He's so funny!!

We're now working on "help" and "play". Those are a little harder, but I bet she picks up quickly, just like she did with these!

Spring Break

This week was Spring Break for Grant. We thought about trying to get out of town for a little while, but unfortunately, we just had too many appointments and a few that we couldn't cancel. So we decided to make the best of the time that we did have and do things around the Pittsburgh area that we haven't gotten around to doing yet. 

One of the things on our to-do list was to visit Lilliput Town Center. Basically, it's a miniature town made out of playhouses that are designed to look like real buildings. There was a market, a coffee shop, a theatre/tv studio, a doctors' office, a mechanic, a train station, and Aiden's favorite, a fire station. 

Aiden spent most of his time fixing cars, 

shopping at the market,

and putting out fires.

Maddie entertained herself by playing with her baby doll, whom she has fallen in love with (however, the dolls could never replace her beloved monkey).

(Please notice her big Buddha belly... I'm totally in love with it!)

Aiden had a blast, and I loved watching how excited he was about being a fireman! 

Then today we had big plans to go to the Carnegie Science Center since we've never been there, but last night it was predicted that we were getting 4-8 inches of snow (On a side note, I want to mention that we didn't even get 1 inch. At the most it was a dusting, which has mostly melted. Oh well.). So, we decided that we would have a day were we just hung around the house. 

I can't remember the last time we didn't have somewhere to go, something to do, or someone coming over and it was the most wonderful day we've had in a long time. I felt like we were able to reconnect as a family. We played with blocks and babies, built tents and towers, baked muffins and napped. There was very little whining or crying, and mostly just playing and smiles and laughter. We ordered pizza for dinner, got both babies bathed, jammied, and then read books. The kids were in bed by 8pm, happy and content. Then Grant and I spent the night watching a couple of TV shows. It was a perfect day and one that I will use to refuel me when I'm feeling stressed and hurried.

I'd still like to visit the Science Center, but I wouldn't trade today for anything! Tomorrow we go back to our real life and our Spring Break will be over. Grant goes back to work and things go back to normal. Next week is extremely hectic and I'll be away from the kiddos for most of the day Wednesday, Thursday and Friday, but today was enough to help get me through when I'm missing them! Best. Day. Ever.

Hiatus

So I promised that big things were coming, and they did. However, I didn't get around to blogging about them.

Maddie's birthday came and went. We had a big celebration planned, but unfortunately had to cancel it the morning of, due to Grant having the flu. I actually don't think I've ever seen Grant so sick before. He doesn't get sick very often, and when he does, it's usually just a little cold that he manages to fight off within a few days. However, this time he was out for a few days with a fever and just slept most of the time. Needless to say, everyone else proceeded to get sick as well for the next four weeks! Ugh! I'm so ready for spring!!

Here are some pictures and video from Maddie's birthday.

Maddie's Smash Cake

I just realized that the candle is in backwards... oops!

Birthday Girl!

I'm hoping that I'll be able to keep up with blogging again and that it won't be a month until there's another update!