Acceptance

A few weeks after Thomas was born in June of 2011, I embarked on a quest to connect with other mothers of children with Down syndrome. I needed to not feel so alone in our family’s new journey. A few coffee and lunch dates later, I started to feel like having a child with Down syndrome wasn’t so rare after all. There are lots of people out there living (happily and fully!) as a parent of a child with Ds. The women I met with will never know how much it meant to me to hear their words of encouragement and, honestly, to see how their lives seemed pretty normal (whatever that means, right?).

Two of these women said something to me that I’ve thought about A LOT since then, especially lately. They both told me that they wouldn’t change their children for anything. At the time, it took me aback. How could you not wish your child didn’t have Ds?

Let me get something straight here: Chad and I have accepted Thomas EXACTLY as he is from the moment he was born. Before we even knew his Down syndrome diagnosis, we loved him for the person he is and the person he was going to become. The Ds diagnosis that came a few hours after he was born didn’t change that. I say this from the deepest part of me. There has not been a single moment in his life that I didn’t accept him.

That said, when he was a teeny, tiny baby, before I knew his awesome personality, before I’d seen his winning smile, before he had hugged me or blown me a kiss, I often wished he didn’t have Ds. It was going to cause such challenges in his life. People might not understand him. He was going to be “different.”

It made me mad that these women told me they didn’t wish their sons were any different. How could they say that? How could they be so naïve? Down syndrome can cause intellectual delays, physical issues, muscle weakness, heart defects, and the list goes on. How can you wish that on your child?

Well, I get it now. And I’m totally on board. I fully accept Thomas for who he is, as I always have. But now, I wouldn’t change a thing about him. {Ok, that’s a lie. I wish he didn’t have Hirschsprung’s Disease. Google it. Another story, another day.} But, I truthfully don’t think about him not having Ds. I don’t wish he didn’t. I’m not mad that he has it. IT’S WHO HE IS. And, I love him…every part of him…every chromosome of his…even that 21st one. They make him. And, he’s amazing. And Thomas wouldn’t be Thomas without that 21st chromosome.

I get it, ladies. I get it. And, I agree with you now. I wouldn’t change my boy for anything.

Thomas - age 3.5

Thomas – age 3.5

Help me spread the word to end the word

The R word.

I’ve said it. You’ve said it. It’s OK. I don’t beat myself up about it, and you shouldn’t either. But let’s get educated, stop staying it, and encourage others to do the same.

The first Wednesday of every March is Spread the Word to End the Word Day. It’s a day to raise awareness of the many, many reasons you should stop using the R word.

Here’s a little background on the word “retard.”

Retard is slang for “mental retardation” which used to be an acceptable term. In fact, it was official medical terminology. Now, because society began using the word as an insult, it is no longer used medically. Today, the more appropriate term is developmental or intellectual disability or delay.

Speaking as the mother of a child with Down syndrome, here are my reasons you should no longer use this word.

It’s offensive. Most of the times I hear the word “retard” or “retarded” used, it’s for comedy’s sake. I cannot even explain how offensive this is to someone like me, who so deeply loves someone who was born with an intellectual disability. Thomas cannot help that he has Down syndrome, just like people can’t control their skin color. What if someone singled out one of the ways you are different from others and made fun of it to get a laugh? Not cool. Every time I hear this word, I have an emotional AND physical reaction to it. It hurts. I used to think words can’t hurt you (stick and stones, you know?). Not true at all. Words most certainly can hurt.

It’s hateful. The R word is hate speech. It’s just as hateful as any other derogatory word used to describe a minority. Watch this PSA featuring a couple of Glee stars. It explains very well why the R word is hateful.

It’s simply not true. People with intellectual disabilities are not stupid. If you think that or assume that, then you’ve probably not been exposed to many people with IDs. Listen, it’s OK. I was sheltered before Thomas was born, too. But, let me tell you, Thomas is NOT stupid. He is a very smart, loving, fun little boy.

I could go on and on about all the things Thomas does that prove he has a lot going on in that brain of his, but here’s the bottom line. Yes, he may learn at a little slower pace than a “typical” child and need a little extra help along the way, but he is a very smart, very sharp kid.

He understands every word that is said to him. He may not be able to speak words back to you quite yet, but he absorbs and processes everything that is said to him. He is a pro at imitating, and he picks up sign language so fast I can’t keep up with him. He’s communicating in a different way right now than a “typical” 2.5yo might, but he’s communicating nonetheless.

My point: If you think you can say something derogatory toward a person with a disability and that person won’t recognize that you are being mean , then you don’t understand people with disabilities. My child is only 2.5yo, and he knows when someone is being mean. You should see his pitiful pouty face when I have to discipline him for hitting the baby or throwing his food on the floor or coloring on the coffee table. I assure you that a 10yo, 15 yo, or 40yo understands when someone is being hateful.

So, next time the R word is on the tip of your tongue or if you let it slip out of your mouth in conversation, think of my sweet Thomas. Think of the hurtfulness of the R word to him, his family, and others like us. And, please don’t use it again.

Happy boy

My sweet, happy Thomas

Join me in helping to “spread the word to end the word.” Lack of education on the matter is the ONLY excuse to use this word. Educate yourself, and others.

“Everyone has a gift, and the world would be better off if we recognized it.” -Timothy Shriver, Chairman of Special Olympics

How my 2yo has taught me to live in the moment

Having a child changes your life. It changes who you are. There’s no doubt about it – you view everything in a different way once you welcome a child into the world. You parents out there know what I mean.

Having a child with special needs drastically changes your life and who you are, or it did for me. The changes have all been positive. I am a better person with a clearer perspective, more compassion, more acceptance of people’s differences and more patience. Thomas has done this for me, and for that I am grateful.

I literally live my life in a different way now than I did before Thomas. Here’s how.

Thomas has taught me to live life in the moment. Like, fully in the moment. To be grateful for what you have right now. To see all the happiness in your life right now. To stop worrying about the silly things you can’t change (or that just don’t really matter all that much – office drama, anyone?).

You see, I could worry all day every day about the future. If I let myself, I’d be in constant tears over what the future could bring (or be an absolute nervous wreck to the point of needing medication). Will Thomas have friends in school once he gets older and kids start to realize he’s made a little different? Will people be mean to him? Will he learn to speak clearly enough for people to understand him? Will he ever be able to hold a job…drive a car…live independently? Will he find love? What happens when Chad and I get too old to care for him, or worse…when we are no longer here to care for him?

OH MY GOSH. Did I just stress you out, or what? I can’t even think about these things. I am a basket case just typing them out.

Here’s what I know right now.

Thomas is loved tremendously (and not just by his adoring family). He is the happiest child because he is loved. He is a rock star at preschool, and sometimes I feel like I’m his entourage. All the teachers know him and love him. Parents know him by name and speak to him as we are walking down the hallway every day. His friends in his class get excited to see him when we walk in the classroom in the morning. This kid is popular.

When we are at the grocery store, Thomas has this ability to make even the most crotchety old man stop, smile and speak to him. Thomas smiles and waves, and you simply have to stop and talk to him. He’s figured out how to be a charmer, and he uses his mad skills freely when we are out and about.  Let me tell ‘ya, he is hard to resist. It’s really hard to not be happy when I’m around Thomas, and I think others would agree. He is happy…he is fun…he is joy.

He’s doing great in all his therapies (more on these in later posts) and is really progressing. He plays and has fun…he throws 2yo tantrums…he gets into 2yo mischief…he’s just a kid doing kid things.

Thomas has a lot going for him. And, he is doing FANTASTIC. And, we are a happy family.

So, why stress about the future when I have no idea what it will bring? I mean, I don’t sit around and worry about what Campbell’s future holds. I’m OK with just letting it happen, and I’ve decided that’s how I’m going to approach Thomas’ future, too. I will be there to support him every step of the way and will help him achieve as much as possible. And, I have every confidence that this boy is going far.

Now, this doesn’t mean I’m not preparing for the future. We’re putting money into our 401Ks. We’ve drawn up wills and established a special needs trust for Thomas. We are being responsible about the future in a business sense.

But, I refuse to waste away all the fun and happy moments we are having right now for worrying about what’s to come.

I encourage all of you to jump on board with this philosophy. It’s seriously a great way to live. It’s Thanksgiving every day in my world, and I have a very cute 2yo to thank for it.

Having fun at Disney World last spring while riding Jungle Cruise.

Having fun at Disney World last spring while riding Jungle Cruise.

Journey with Down syndrome: my pledge

Oh, Thomas.

How do I even begin to write about my boy? My precious, funny, smart, amazingly AWESOME boy who makes my heart sit at near-explosion at all times.

As I said in my intro blog post, one of the reasons I couldn’t resist starting a blog is because I want to take part in educating my little corner of the world about Down syndrome. I’ve learned so, so, so much about so, so, so much since Thomas was born in June of 2011, and I’m just bursting at the seams to share what I’ve learned.

For the last few weeks, my mind has been racing ‘round and ‘round about all the things I could share, and I’ve really been struggling with where to start. I’ve decided to begin with a short and sweet post in which I declare a pledge to you.

I will be real and honest.

Those of you who know me know I’m a pretty “real” person (or, I think you know that about me). I have no desire to create a false image of myself or of my family. We are who we are. Period. So, I will not use this blog to paint a perfect picture of life. I will share the immense joy of raising Thomas (and my other children, of course). I also will share the challenges associated with raising a child with Down syndrome. I’m definitely a more optimistic person than pessimistic, so you’ll see that in my approach to raising Thomas.

I am an open person (obviously…I’m blogging), and I want to share my parenting journey. I love to talk about my kids and have to be very intentional about not going on and on {and on and on} about them. I could be wrong, but I think people have questions and curiosities about Thomas and my life with him.  I hope to answer some of these via this blog and hope the fact that I’m blogging demonstrates that anyone and everyone is welcome to ask me questions if you have them. I love to talk about Thomas and am not weirded out in the slightest if you ask me questions about Down syndrome. I am BEYOND proud of my boy and would love nothing more than to talk about him. Down syndrome is not a shush-shush sort of thing in my house. We do not look at it as a bad or negative thing, and you shouldn’t either.

Here are a few recent pictures of Thomas. Oh, how I love this little boy! Looking forward to sharing our journey with you.

One of our last pool days of the summer. What's cuter than a toddler in a diaper??? And doesn't his hair look like that of a teenager here???

One of our last pool days of the summer. What’s cuter than a toddler in a diaper??? And doesn’t his hair look like that of a teenager here???

I never have any problem getting this boy to smile for the camera. He's quick to flash a great smile!

I never have any problem getting this boy to smile for the camera. He’s quick to cheese it up!

Thomas' first night in his "big boy" bed. We found him a twin bed that is very low to the ground so he can get in and out of it. It's perfect for him, and he's done so great in it.

Thomas’ first night in his “big boy” bed. I found him a twin bed that is very low to the ground so he can get in and out of it. It’s perfect for him, and he’s done so great in it.

Signing that he's "all done" with his dinner. The boy LOVES yogurt!

Signing that he’s “all done” with his dinner. The boy LOVES yogurt!

Getting a first-class ride to his first University of Tennessee football game. He loved it (and did better than the 4yo at the game).

Getting a first-class ride from Daddy to his first University of Tennessee football game. He loved it (and did better than the 4yo at the game).

Oh my. Be still my heart.

Oh my. Be still my heart.

Hanging out in the wagon at the pumpkin patch a few weeks ago

Hanging out in the wagon at the pumpkin patch a few weeks ago.