Month: March 2019

April is Autism Awareness Month.

I’ve seen some heated debates the last few days about “celebrating” autism. 

“Why would you celebrate autism?  These people have difficult lives, plagued with language disorders, sensory processing disorders, gastrointestinal problems, seizures – the list goes on and on!”

Then there’s the “other side” that says if you don’t celebrate autism, then you aren’t accepting your child as they are, and you are a terrible parent for not loving the fact that your child has autism.  “Why would you want to change your child?!”

It’s just like everything else in life:  you can’t please everyone, and someone is going to be offended by whatever side you choose. 

Since this is my blog, I get to say what I think about it!  Here’s my two cents:

I WILL be celebrating Autism Awareness month, and here’s why:

because I love my son who has autism.

You see, when I became a mom, I knew it would be my job to prepare my kids for the outside world.  It would be my responsibility to teach them about strangers, bullies, and being kind to others.  It is my job to teach them about God.  I would be the one teaching them how to cross the road safely, teach them how to swim, and teach them how to brush their teeth.  When I became a parent, I signed up for all that stuff.

What I didn’t know is that I would have to teach the world about my son.  The day he received his autism diagnosis, though, I gained a new title:  advocate.

Both of my sons are amazing – the neurotypical one and the one who has autism.  I want the world to know that…no, scratch that, I need the world to know that.  So I will celebrate Autism Awareness Month. 

To me, April is the time that we shine a light on autism.  We are celebrating the unique, au-mazing, wonderful individuals who happen to have autism. 

So we advocate.  We share our stories – the struggles and the triumphs.  We highlight the amazing things that our kids can do despite the barriers before them.  We join together as the autism community and raise awareness.

…because autism awareness leads to autism acceptance. 

At this point, I think most people know about autism.  Just knowing about it, well that is awareness.  Now, we push for acceptance.

I want my son to live in a world that accommodates his needs without seeing it as an imposition.

I want my son to live in a world that sees his value and encourages him to pursue his dreams. 
I want my son to live in a world that loves and accepts him for who is.

It is my responsibility to create that world. 

It is my responsibility to be his voice.  It is my responsibility to fight for the things that he needs.  It is my responsibility to educate others.  Acceptance starts with me.  It starts with you.  Doctor Seuss said it best: Unless someone like you cares a whole awful lot, nothings going to get better, it’s not.”  We can’t just expect things to change – it takes action from those of us who care a whole awful lot.

Our advocacy shouldn’t stop on April 30.  No, it is my mission to advocate for my son – and all on the spectrum – every day of the year.  April might be the “official” Autism Awareness Month, but I am declaring every month “Autism Acceptance Month.” 

Now, bring it, April.  Here I come!

The Darsts just finished our third Disney vacation.  As always, we had a great time, and I wanted to share a few highlights from our trip.

We knew we loved Disney two years ago when we realized just how accommodating and understanding they are of those with disabilities.

The boys are five and six years old, and they really enjoy meeting the characters.  Before the trip, I made sure to program Colin’s device, LAMP Words for Life, so he would be able to say the characters’ names when he met them.  I have to say, each character really took time to watch and listen as Colin used his AAC device to say their name.  He loves Wreck It Ralph, and Vanellope got super excited when she saw her name on the device.  It’s the little details like this – castmembers taking the time pay to pay attention to a kid who communicates differently – that sets Disney apart.

Finley also beat Ralph in a game of rock-paper-scissors, everyone thought that was pretty funny too:

Finley said he just wanted to hug all the characters, and that he did.  He decided that Pluto is his favorite, so we had to meet him twice.  (And Grandma spent like $30 on a Pluto hat.)  We also learned that he’s our adrenaline junkie and he loves rollercoasters and going fast.

Colin has never been able to enjoy fireworks.  The booming sounds scare him, and we always have to find a place to hide out or just leave the park early.  We tried ear muffs this time, and they worked wonderfully.  He got a little anxious a couple of times, but overall, he loved the fireworks show at Epcot.  He smiled, clapped, and said, “yay!”  He also looked over at me two different times and said, “Thank you.”  Heart.melted.  Just the fact that he could enjoy this with the rest of the family, that was enough to make my trip….but then the fact that he is able to TELL ME “thank you,”….he has come so far in the last year.

Curtis and Finley are big-time Star Wars fans.  Deidra and Colin…not so much, but we went along.  Colin got anxious before we went in to see Chewbacca, and by the time we got in there, he wasn’t having it.  The music was super loud in there, so I said I would take Colin outside while they went to see Kylo Ren  (and who am I kidding, Kylo Ren is super intimidating and I wasn’t about meeting him anyway!)

Colin and I made our way outside.  We found a little area that was empty (a rarity at Disney), and we sat down to get calm.  I heard Storm Troopers approaching.  I thought, “Oh no.  They’re coming.”  Ya see, I don’t love meeting characters, I just do it for my kids.  I’ve never been a big fan of costumed-characters.  But I looked down, and suddenly, there’s a big white Storm Trooper foot right beside…no getting out of this one.  But guys, the two Storm Troopers and their three body guards? Handlers? First Order Supporters?  Whatever they’re called….they spent a solid five minutes interacting with Colin.  A castmember offered to take my phone and take pictures which I thought was super sweet.

I should have gotten their names because this little five-minute interaction made my week.  They took the time to talk to a little boy who has autism and had just had a rough time.  They were caring, understanding, and thoughtful.  This smile says it all:

And to the Storm Trooper who stood there patiently while Colin stuck his hand down his armored-leg…thanks for being cool about it, Bro.  We will definitely have a talk about how to appropriately interact with a Storm Trooper for our next trip. 😂

Here are just a few of my favorite pictures from the week:

As we head into Autism Awareness Month, this is the advice I want to share:

-Be kind, you never know what someone is going through.  They aren’t BEING difficult, but they might be having a difficult time.
-Take the time to really listen to kids like Colin on the spectrum, because they have things to say.
– If you initiate an interaction, I promise it’ll be worth your time.
-Be patient, because kids like Colin sometimes need more time to process and communicate.

One small act of kindness just might make someone’s day, so take note from Disney and BE KIND.

Now – let’s do Autism Awareness Month like it’s my job….oh wait….it IS my job!

Before I became a mom, autism was my greatest fear.  

 For years, I have had to tell people that my son is nonverbal.

 “Oh, he doesn’t talk.”

 “He can’t talk.”

I have spent countless hours worrying, wondering, praying…”will he ever talk?”

We have lived a world with no words. Lots of noises. Sounds. Screams. Laughs….but no words.

I have always known that there is a chance that he will never talk…and that hurts my SLP heart…and breaks my Mommy heart.

Then I realized that I just wanted him to communicate with me. If that’s with his AAC device, I am perfectly happy with that. I really, truly am. To known his wants and needs. To know his thoughts. Just to hear him comment on things. 

LAMP Words for Life has given him the ability to do that. And with his communication with his device has come something else….spoken words. He amazes me every day. He is echoing what we say. Echoing his device.

Tonight, as we watched a video about sharks, he quietly whispered, “shark.” He is saying more and more recently, and it still gets me every single time. Little moments like this give me hope that we will one day live in a world with words.