Spread the Word

Today - March 6th - has been declared "Spread the Word to End the Word Day". It's a campaign started in part by the Special Olympics to bring attention to the need to eliminate the use of the R word from our vocabulary.


I'll be honest, I have struggled with whether or not I think it's a fight worth fighting for the past few years. The phrases "it's just a word", "don't be so sensitive" and "here come the PC police" all come to mind when talking about this issue. But then I look at my son and I think of the gut wrenching feeling I get every time I hear someone say it or I read it somewhere and I finally decided that it is a cause worth standing up for.

I have no illusions that every person in the world will stop using the word "retard" but I hope this campaign will at least make people stop and think about who it affects when they say it.

The words "mental retardation" started out as a medical term to describe someone with slow mental development. It is one of the primary issues that people with Down syndrome have to deal with. But that doesn't make them stupid.

Let me say that again...people with Down syndrome aren't stupid.

They may take longer to learn concepts than their typical peers, but they are capable of learning. Slow does not equal stupid.

Unfortunately, the R word is thrown around by people in our society to describe everything from a friend who is acting dumb to a machine that isn't working properly. The use of the word in those contexts is bad enough (if only because it's a completely inaccurate use of the word!) but much worse is when it's used as a hurtful insult to someone with a disability.

My son may have Down syndrome but that doesn't mean he doesn't have feelings. It doesn't mean he is immune to your insults or comments. And it definitely doesn't mean he is deserving of them. He is only 4 but already he goes out of his way to be nice to every person he meets. He flashes his infectious smile, blows kisses and gives hugs to everyone he can.

When you use the R word - in any way - it's hurtful to him, it's hurtful to me and it's hurtful to the millions of other people with developmental disabilities and the people who love them. It's time to stop it.

I'm not going to sit here on my high horse and act like I've never said it either. I have and even though I never used it in a way that I thought it would hurt someone that doesn't make it okay. But I don't use it now. And I hope that the next time you think about using it or even the next time it slips out of your mouth (change is hard!) you will think about my son and how that word may affect him and how much he doesn't deserve it.

The Ability to Live

I am sitting in my car with Aaron waiting for my husband, who is talking to someone inside a car dealership. A salesman inside looked at us and the first thing that crossed my mind was "I wonder what he is thinking." The thought didn't last long. I really don't care what he is thinking. But that isn't always the case. Far too often I do care what other people think and I don't think I'm alone. It has gotten better as I have gotten older. Other people's opinions matter less to me now than they used to. But how great would it be if they truly didn't matter at all? If other people's judgements and thoughts about us were completely irrelevant and we could live our lives without worrying about how we "look" to others.

Then it hit me. That is exactly the gift that my son - and most people with Down Syndrome - have been given. You know the saying "dance like no one is watching"? That's what he does. He dances, sings, expresses his emotions and LIVES like he wants to. Like no one is watching. Like he doesn't care what anyone thinks. I know he is only 4 but many 4 year olds have already lost the ability to live like that. And since I have had the pleasure of meeting many older children and adults with DS, I know this isn't something that will go away as he gets older. These people have been given a gift that we all strive for. The ability to live life to the fullest. To see joy in the world. To love other people and treat those around them with care and respect. How many people without DS do you know that blow kisses to strangers and hug everyone they meet? Don't you think the world would be a better place if more of us did that? Or at least greeted others with warmth and a smile?

Society may say that people with DS are disabled. That they are different and should be pitied or worse, never brought into this world at all. But I know the truth. They have something that we should all strive for. They get to LIVE.

And today I am thanking God for bringing this child into my life and allowing me to see that.

Aaron Rocks Out

Aaron loves music. He loves dancing. And, amazingly, his favorite music has nothing to do with Elmo or Blue's Clues!

No, Aaron's favorite group is none other than:

The Black Eyed Peas

So, here's a hilarious video of him dancing to "Boom Boom Pow".

Selective Hearing

Aaron comprehends a lot more than even I realize most of the time. The other day he saw a sticker with the number one on it and he brought it to me and held up one finger! He knew it was a number one! Incredible!

Then we have days like today when he wants to watch Blue's Clues for the 10th time and I tell him "no". But he just looks at me like he doesn't understand me and gets closer to my face and asks over and over again. He sure knows how to play up the "I don't understand card". Stinker.

But don't worry I'm not giving in. I've got his number. 😉

We Have a Talker!

When Aaron was born and subsequently diagnosed with Down syndrome, several people told me that they believed he would grow up to be a great speaker. That he would have an impact on this world. That he would do great things with his life.

Those are all great things to hear when your child has just been diagnosed with a permanent, developmental disability that will alter the course of your life.

I don't know if those things were said to me to make me feel better or because the people who said them truly had a strong feeling that they were right. Whatever the reason though, they have stuck with me over the past four years.

Specifically the one about being a great speaker. It had to do with his name. Aaron is a biblical name. Aaron was Moses' brother who spoke for him when Moses could not.

However, as the years have passed and the words haven't come, I have wondered if there would ever be any truth to those words that were spoken to me back to then.

We have been getting speech therapy since Aaron was just a few months old and all along his therapists have told me that he is doing great and they are so proud of him and he is improving so much. And while I appreciated the praise and encouragement, I couldn't help but think:

But he still can't talk!

UNTIL TODAY!!

TODAY Aaron said "Thank You" to me. He didn't use sign language and I didn't prompt him. He was eating breakfast and I told him he was doing a good job using his fork and he looked at me and said "thank you", then went back to watching Blues Clues.

It actually took a minute for me to register that he had actually spoken to me. Then I almost burst with delight.

To be clear, these weren't Aaron's first words ever. He has been saying "Daddy", "Bubba", "Ball", "Pop", "Papa" and occasionally "Mama" or "Mom" for a while now. But they are just single words.

"Thank you" is a phrase.
It has distinct sounds that differ from each other.
And he didn't sign it at the same time.

All of these are huge breakthroughs for us that for me, pretty much equal the excitement I felt the first time he walked independently.

I don't know if Aaron will grow up to be a public speaker or change society in any dramatic way. But he has already impacted many people's lives and he is going to make a difference. Some how, some way, to someone. Even if it's just me. He already has.

AND NOW HE CAN TALK!!!

I'm Not Special and Neither is My Kid

First, I want to say this post may be a bit controversial and it may even offend some people. If so, I'm sorry in advance. My intention is not to offend anyone, but instead to give you a glimpse into my life and the lives of many other parents of children with special needs.

Just a few days ago, I read a Facebook post from one of my favorite DS parent advocates, Noah's Dad, asking parents to help him with a list of Top Things NOT to Say to the Parent of a Child With Down Syndrome. While I have heard a lot of sentiments that were listed (thankfully, not all of them because some of them were really cruel), one that is repeated very frequently to many of us is this:

"I believe God only gives special children to special people."

Now, if you don't have a child with special needs, I know what you are thinking: "what the heck is wrong with that?!?" Right? It seems nice and complimentary and typically comes from a good place in your heart.

Well, let me tell you why it's not. Even if you mean it in a nice way (and I believe most people do), what it says to me is this:

"I'm glad it's you and not me"

I'm not special. There's nothing different about me or my family. I have two little boys that I do my best to take care of every day. My son who has Down Syndrome has also been diagnosed with Celiac Disease, multiple food allergies, Sensory Processing Disorder, PDD-NOS (which is on the autism spectrum), Asthma, Sleep Apnea, chronic ear infections and several other smaller issues that I can't even think of right now. We go to therapy four times a week, see 10 different doctors on a regular basis and have to worry about things like how to provide him with the best and most inclusive education while also providing the supports he needs. I haven't even had to go to an IEP meeting yet because he hasn't started school, but let me tell you, just the thought of it is overwhelming.

If this is what it means to be "special", I don't want it.

That's not to say I don't want my son. I love him, I would and will do anything and everything for him that he needs. But you would too if he was your child. That's what we do as parents. I'm not any more or less special than you are because my son faces these challenges.

I wish that I could go out somewhere and allow my child to walk next to me. He is almost four years old. But I can't. He will run away from me. He has no safety awareness. He can't communicate with other people. He is cute and friendly and blows people kisses and they all think it's adorable, but they also wonder why he isn't talking back when they speak to him. This isn't what I want for him. I wish I could take him to the playground and talk to my friends while he plays with the other children. But I can't. He will get hurt or run into the street. I wish I could send him to school without agonizing over what environment is best for him and wondering how in the world to trust these strangers that are supposed to be teaching him. He can't talk to me to tell me what is happening at school.

I don't say all of these things to make you feel sorry for me. While raising a child with special needs is challenging, it doesn't make me special. And I truly don't believe I do anything different than any other parent would do.

People can say really cruel things and by no means is this the worst that I or most parents who have children with special needs have heard, but it doesn't say what you think it does to us. It makes it sound like you pity us. And we don't want pity. We want our kids to have the opportunities and acceptance that yours do. We want friends and family to accept us and our kids and give us support when we need it. Although my outlook on life changed when Aaron was born, I didn't suddenly become someone that was more "special" than any other parent.

If my life or my son's life inspires you or makes you appreciate your own kids more, that's great. Tell me that. If you think I'm stronger than you are, you are probably wrong. I get by, I do what I can for my kids and I try to handle it all. Most of the time I feel like a nervous wreck.

I certainly don't feel special.

End of 1st Grade and Georgia Bound!

The end of the school year was crazy as always so now it's been another month since I updated the blog. Oh well! Since the last blog post, Jacob finished 1st grade and we made it safely to Georgia to begin our summer tour.

Jacob finished his school year on May 25th with a very long and difficult day (insert sarcasm here) that consisted of going to the park for two hours and getting out of school at 10:50. He did tell me a few days before school was out that he was sad that school was ending because he loves it. At least I know he didn't mean it all those times he didn't want to go because it was "so boring". :-)

We really did have a good school year. He excelled in all of his assessment areas and we both loved his teacher. We only hope 2nd grade is even better!

After school got out for the summer we had a fun weekend at the Phoenix ComicCon being nerdy. Matt met Lou Ferrigno (the Hulk) and William Shatner, Jacob met Jeremy Bulloch (Boba Fett), and we all met Lavar Burton - who was pleased that we were Reading Rainbow fans! :-)  We all had a great time looking at all of the "crazy" people dressed up in costumes and Jacob even won a Ghostbusters t-shirt in a raffle from the Arizona Ghostbusters! It was a lot of fun.

On Wednesday afternoon, the boys and I began our seven week adventure in Georgia. We had a flight on Southwest that I was VERY nervous about because Aaron screamed for the entire 4 hour flight last year.

I did everything I could to prepare. We had plenty of snacks, drinks, his stuffed puppy dog and the iPad loaded with an entire season of Blue's Clues. Overall, he did great. He yelled (happily) during Blue's Clues several times (if you have ever seen him watch an episode of that show you will know this is not unusual) but I much prefer that to the screaming. He didn't start crying until 20 or 30 minutes before the plane landed and by then he was just sick of being strapped down so there wasn't much I could do to calm him down. But I will take that flight over the last few we have taken any day. Hopefully he is getting more tolerant now that he is older and having the distractions that we did helped. However, I still don't recommend traveling with two small children and all of their stuff alone - it is very difficult. But it will be worth it to be able to visit our family and friends in Georgia for the next 7 weeks!

We are thoroughly enjoying a break from the 110 degree + temperatures that we were experiencing in Phoenix. I'll take the humidity over that insane heat any day.

So, if you're in Georgia and you want to see us this summer, let me know!