Month: December 2018

A Million Dreams

Since taking on my fifth job – yes, fifth – I’ve been a little MIA on my blog. I was a little busy, but also, didn’t really feel like I had much to write about either. We have been doing the daily grind: school, therapy, homework/housework, bed, repeat. Nothing “big” happening really, so no blog posts.

Colin has decided that he loves The Greatest Showman. Between that and Ice Age, we aren’t watching much else right now. Yes, I know, he has very diverse taste, right? He is so mesmerized by the songs, we rewind and listen over and over to our favorite songs. (Do you really rewind a digital movie? Or is that just what us old folks still say because we grew up on VHS?) Anyway, this gave me a series idea: blogging about autism using the soundtracks from The Greatest Showman. This past summer I wrote about my take on This is Me and autism, so now I’ll do a post for each of the other songs. First up: A Million Dreams.

A Million Dreams starts off with P.T. Barnum as a little boy, saying:

Through the dark, through the door
Through where no one’s been before
But it feels like home

Autism is like that. We often feel like we are in the dark, going through something that no one else has ever experienced. You just crossed over into the unknown. What will “autism” mean for your family? Will my child ever talk? Will this get better? Easier? It’s like going through a hypothetical door when you get that official diagnosis. You aren’t sure where it’s leading you, but it feels like home. And do you know why it feels like home? Because this is still your wonderful, perfect son or daughter. Everything has changed…yet it hasn’t changed at all.

The next stanza, the boy is saying that people might call him crazy, but that’s okay, because

We can live in a world that we design.

Also, totally relatable in the world of autism. Our lives look strange to “outsiders.” Unless you live it every day, you won’t understand it. Our parenting is often judged and our children often misunderstood. Sadly, you and your child will likely be called “crazy.” Or “weird.” Or “bad.” You quickly learn, though, that it doesn’t matter what the world thinks. You know what works for your family, and you live in a world that you design.

The chorus:

‘Cause every night I lie in bed
The brightest colors fill my head
A million dreams are keeping me awake
I think of what the world could be
A vision of the one I see
A million dreams is all it’s gonna take
A million dreams for the world we’re gonna make

This is where it really hits home for me. As an autism mom, I really do lie awake at night. Some nights, I’m worrying about something. Other nights, I’m reliving a particularly big milestone that was met that day. Others, I’m plotting and planning and scheming, trying to figure out how to make my son’s life the best it can be.

We have to be dreamers, but we must also be doers. Just like P.T. Barnum and his circus, it’s gonna take a million dreams to bring about the vision I have for the world. Not just a world of awareness, but one of acceptance. A world of understanding…one of inclusion…one of love. A million dreams,…and advocacy, education, outreach, storytelling, listening, and learning. Blood, sweat and tears…and lobbying, and sharing our stories.

If you’re a part of the autism community, you know what I mean. We have to work and fight and work some more. This world isn’t always accommodating or accepting of those who are different. It is our job to change that. Together, we can make a difference…because a million dreams is all it’s gonna take, for the world we’re gonna make.

ABA acceptance awareness community tribe

Your Tribe

This is a topic I’ve written about before: finding your tribe. Your people. The group of people who “just get it.”

Something I can say about the autism community: we have an amazing group of people to call “ours.” We are a group of people who fiercely love our kids and will do anything and everything to help them. Because of our shared experiences, we also bring something else to the table: acceptance.

Yesterday, Colin’s school had a Christmas party at a local bounce house place. These types of places usually bring so much stress for me: can I see both of the boys? Are they okay? Are there other kids who aren’t paying attention to the little ones and might hurt them? Is Colin following the rules?

I didn’t feel a single one of those emotions yesterday.

Why?

Because we were with “our people.” People who understood. People who didn’t bat an eye when a kid sat on the floor and spun in circles. People who accept kids who are a little different, because their own kid is a little different too.

I stood and watched yesterday, and do you know what I saw?

I saw joy on every kids’ face.

I saw parents enjoying their kids.

I just saw regular families, enjoying a party.

I saw acceptance and love.

I heard this question today:

“What would you attempt to do if you knew you could not fail?”

I’d want to make the world look and feel like yesterday’s party looked and felt. Our kids on the spectrum, just having fun, being themselves, and being accepted and loved for it.

ABA BCBA progress thankful therapy

The Perfect Gift

This picture makes my heart happy.

This is Colin and Teri, his BCaBA. Rumor has it that after they cuddled cheek to cheek and looked out the window, he gave her a kiss on the cheek.

This is part of his school day, and I’m so thankful for all of these people. We are so blessed to have this amazing team of people as part of our tribe. He loves his school too – he grabbed his back pack and was ready to go to school before I even said it was time to go today.

I’ve been looking back on 2018. He’s come such a long way.

He said his first word.
He started using his AAC device.
He is following directions.
He is matching pictures.
He is receptively identifying pictures.
He is labeling pictures with his device.
He is verbally imitating words.
He is sleeping through the night, initiating more, even doing some chores.

Every Christmas season, I try really hard to find the perfect gifts for my kids. To find those things that will make them smile and bring joy.

This picture represents everything that I wanted for Colin this year.

Last Christmas, I just wanted to hear his sweet voice. I got to hear that first word in January.

I wanted him to communicate with me. He started using his device in March.

I wanted to get him the help that needed in order to give him his best chance. I wanted to surround him with people who believed in him just as much as I do. I am forever thankful for all that Teri (and the rest of his amazing team) has done for him and our family.

He might not know it yet, but they have given him the best gift ever: teaching him how to learn, accepting him as he is, acknowledging all that he has the potential to be, and loving him for the perfect little boy that he is.

Uncategorized

Update

It’s been almost a month since my last post….geez, did you guys get worried about me?! I never go that long!

I’ve been so stinkin’ busy. I have five jobs…Finley says I need six. I’m working on a lot of different projects right now and I’m super excited about all of them….but I’m also ready for a week off for Christmas break!!

Just a few updates:

Colin has been talking so much. *insert heart eyes and praise hands and all the celebration emojis* he is naming colors without any prompts or models. He tries to imitate almost all words that we do model for him. He’s even said some 2-syllable words which is huge because he mostly shortens words to one syllable. Last week he told me he wanted to watch Muppets on his device. I said, “Muppets?” He verbally said, “muh-peh!”

If you remember, my Pawpaw passed away in March. I recently printed some pictures of him. Colin has been obsessed with them. Today, he pulled out the stack of pictures and lined up all the ones that had Pawpaw. He pointed to every single one and said, “Pawpaw” as he touched each one. He misses him. I hope he understands where he is, but I don’t know. Death is a hard concept for any four year old….but I do know that Pawpaw would have been so proud of Colin as he is learning to talk. And I know that he would love that Colin says “Pawpaw” so well.

In other news, Finley determined today that “it isn’t fair, I don’t get to do anything I want to do. You’re no fun.” That means we are parenting right… right?

Then later he looked at me and said, “in the shadow, you kinda look like a man. You look like you have a beard.”

Wow, he’s really on a role just 7 days before Christmas…but he also wrote me a note that said he loved me, so, I guess that balances out.

MERRY CHRISTMAS!!