Light It Up for Autism

I don't talk about Autism as much as I do Down syndrome, but Aaron is one of the many kids out there with a dual diagnosis. Last summer he was diagnosed with Pervasive Developmental Disorder (PDD-NOS), which is one of the diagnoses that puts a person on the Autism spectrum. He doesn't have the social problems that many people with autism experience, but he has significant sensory issues, behavior problems that are more severe than most kids his age, no safety awareness and several other factors that add up to the PDD diagnosis.

Unlike when we got the Down syndrome diagnosis, I wasn't devastated when he was diagnosed with PDD. Quite the opposite actually. Before he was diagnosed, I was frustrated, stressed and felt like I was at the end of my rope with his behaviors and inability to control him. When his Developmental Pediatrician at the DS Clinic in Atlanta discussed his issues with me and gave me the diagnosis I felt a huge wave of relief. There was a name for it. I wasn't crazy. And most importantly, there were things I could do about it.

I still haven't learned nearly as much as I need to about PDD or autism, but I am learning what he thrives on (routine, music and Blue's Clues) and what upsets him (unfamiliar environments and situations and getting overstimulated). Just as with all of his other diagnoses, we learn more every day and we deal with each one as they come. A sweet friend of mine told me when Aaron was born to take things one day at a time and if that was too much, take it half a day at a time or an hour at a time. I have gone back to those words more times than she could ever have imagined and it's truly how I have lived my life since. I don't look too far ahead and when things get rough, as they often do, we just take them an hour at a time.

April is Autism Awareness Month and today, April 2nd, is World Autism Awareness Day. Autism Speaks is encouraging people to "Light It Up Blue" - wear blue, change your FB profile to raise awareness for Autism and participate in awareness campaigns.

The CDC now says that Autism Spectrum Disorders affect 1 in 50 children. It is even higher for kids with Down Syndrome. Nearly everyone knows someone that has been affected by Autism. The more awareness we have, the closer we will come to finding better treatments. We are wearing our blue today - are you?

World Down Syndrome Day 2013

It's the best day of the year! Today - March 21st - is World Down Syndrome Day. Officially recognized by the United Nations and people around the world, 3/21 is recognized as World Down Syndrome Day because the date reflects the most common cause of Down syndrome - three copies of the 21st chromosome.

If you read this blog then you know that my sweet boy was born with Down syndrome. We have been through many ups and downs in the past 4 and a half years but he stole my heart the moment he came into this world and no diagnosis could ever change that.

Last year I wrote about his birth story and a little bit about what we went through when he was diagnosed. If you would like to read about that, you can see that post here: World Down Syndrome Day 2012.

This year I think I'll share something different. When parents get the diagnosis, whether it is before or after their child is born, they are scared and understandably so. No one wants to hear that there is something wrong with their child. It's terrible for most parents when your child has something as simple as an ear infection, just imagine being told that your child has a permanent, life altering disability. Your entire world is turned upside down. You see all of the plans you had made for your future and your child's future going down the drain. It's terrifying. And even now after four and a half years, I still have those moments of fear and grief for the life I thought we would have.

But whenever those moments come (and they are much less frequent than they used to be), I try to step back and look at what we have. We have a beautiful family that is full of love and joy. Isn't that all we can really hope for? It's not always easy, but being a parent is never easy, regardless of any diagnosis your child may or may not have.

So, I'm going to try to dispel a few of the myths some people have about Down syndrome.

People With Down Syndrome Can't Learn
Not true. Yes, Aaron takes longer to learn things than his typical peers have, but that doesn't mean he isn't learning. Just because he doesn't meet the milestones "on time" doesn't mean he hasn't met them and it doesn't mean he won't continue to meet them. He may need more support and extra help but if he has the tools he needs, he will continue to learn and grow and is capable of great things!

People With Down Syndrome Are Always Happy
Umm, no. Although Aaron is probably happier than most kids when he is out and about interacting with other people, by no means is he always happy. He experiences a full range of emotions just like all of the rest of us. BUT, he is usually very friendly, has an amazing smile and laugh and his personality will light up any room. I can't count the number of times people have told me that he has made their day just by smiling at them, blowing them a kiss or giving them a kiss - all of this without being able to talk.  That is something we should all try to celebrate and emulate - not be afraid of.

People With Down Syndrome Are Angels
Similar to the previous paragraph, Aaron is by no means an angel. He can manipulate and throw a tantrum with the best of them. Jacob as a toddler was an angel compared to Aaron. He has shown us why every single child proofing device ever invented is necessary and why there still aren't enough of them. He is a pick-pocket and a flight risk. Then he smiles and hugs and kisses you and you forget all about his devilish ways. He is a child, a four year old with his own personality and a human, just like the rest of us.

People With Down Syndrome Are Sick
This one can be tricky to answer. Down syndrome is not an illness. Just having DS does not mean a person is ill. However, people with DS can be more prone to certain other medical conditions. About 50% have some type of heart defect but that doesn't mean they are life threatening. Aaron had a tiny hole in his heart when he was born (so he is part of that 50%) but it has since closed on it's own. Jacob actually had the same thing when he was born and his was larger and took longer to close - but it has as well. Most people with DS have what is called Hypotonia (low tone), which basically means their muscles are floppier than they should be. This is the reason they take longer to grasp a lot of gross and fine motor skills like crawling, walking, eating independently and even talking. It takes more work for them to use their muscles than it does for people with normal muscle tone. Conditions like Celiac disease, Alzheimer's and even leukemia are more common in people with DS than they are in the general population. But, other conditions such as solid tumors are less common in people with DS. There is even research being done to see why and if the answers could help treat or cure people with cancerous tumors. Isn't that amazing?! You can't tell me there isn't a reason for people with Down syndrome to be a part of this world - they could help contribute to curing certain types of cancer!

Aaron has certainly had more illnesses and medical diagnoses than a typical 4 year old, but even all of those doctors and diagnoses don't mean he is sick. He's sick when he gets a cold or an ear infection but otherwise, he's just a kid who has some medical conditions we have to manage.

People with Down syndrome are more like the rest of us than they are different. They have certain features that may make them look similar but that doesn't make them all the same. They are unique individuals just like we all are. I hope you will take the time to get to know someone with DS and see that they really do have something to give to this world.

Happy World Down Syndrome Day!

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!!!