Month: October 2018
My Broken Mommy Heart
Not Second Rate
That phrase in that picture up there? That is what ABA is about to me.
I’ve had several people ask me lately, “Why do you travel so far for Colin’s ‘school’?”
“Is it worth it?”
“Will he ever go to real school?”
Here are the facts:
1. Colin is smart.
2. He has autism.
3. His autism means that he learns differently.
4. He deserves to be taught in a way that he can learn.
That’s it. Plain and simple.
ABA looks at where he is functioning right now. What are his strengths? What about his areas of deficit? His therapy is intensive and completely individualized.
Stanley Greenspan, a child psychiatrist, said it best:
“All children have within them the potential to be great kids. It is our job to create a world where this potential can flourish.”
I also like this quote from Tony Attwood, a psychologist from Australia:
“Love the person with autism. It’s a different culture. It’s a different way of thinking and don’t perceive it as second rate. It’s just different.”
We love Colin, and we see that he is just bursting with potential. It is our job – as his parents, his advocates, his voice – to help him realize that potential. ABA is helping us help him.
I shared a video on my Facebook page last night of Colin doing some travel matching in the hallway with distractions. A year ago, that would never have been possible. He is now trying to verbally say anything that we model for him. Just six months ago, he wasn’t repeating anything at all. He follows directions now (for the most part!), which is making life easier (and safer!).
ABA has taught him how to learn. I am amazed by the progress that he has made since starting ABA. I know that he will continue to learn and do great things.
With the autism prevalence increasing this year, we will be seeing more and more kids on the spectrum. We really need to consider this and make the conscious decision to see them as unique individuals who have value and not a burden because of their difference.
Camping
As part of AAC Awareness month, I have a story that will impress upon you the importance of alternative and augmentative communication.
Colin loves Grandpa’s camper. All summer long, he would go to their house, run out to the camper and want to go in.
One day, Grandma told him, “It’s locked, we need to tell Grandpa that we need the key.”
Colin verbally started saying, “key.” Now, every time he says “key,” we know that he is wanting to go in the camper.
Friday night, he saw the camper pulled down in the yard being loaded for a weekend camping trip. He wanted to go in so badly! I added “camping” to his device. I showed him where it was, just one time, and he smiled. He took the device, navigated to the correct page, hit “camping,” and then verbally said, “GO!”
So guess where Colin went this weekend? He went camping with Grandma and Grandpa. This was his first overnight stay away from Mommy, and honestly, it felt weird. Even Finn said, “It’s weird without Colin.” We all missed our Stink, but I know that he had a great time.
This is how Colin’s device functioned to “augment” or “supplement” his verbal communication. He could say “key,” and we know that means “I want to go in the camper.” “Go” is pretty self explanatory. He wants to go in the camper….But by adding “camping” to his vocabulary on his device, he was able to tell us that he actually wanted to go camping.
That might seem like such subtle difference, but it’s not.
“key” + “go” for Colin might have just meant that he wanted to sit in the camper while it was parked in the front yard.
BUT “key” +”camping” +”go” meant actually going away from home to stay in the camper…actually camping.
Do you see how one little word completely changed the meaning and outcome of that communication? For kids like Colin, expressing more abstract thoughts or requests isn’t easy. I know there are plenty of times that Colin wants something, or wants to do something, or has thoughts about things that he cannot yet express to us – and that breaks my heart.
Words are big, important, necessary, and powerful.
When Grandma came up to get him Saturday morning, he got his device and said, “camping.” He was hugging Grandma and was so excited.
As we loaded him up in the van, he was so excited – he was going camping!
I almost cried. One, I was sad to see him go somewhere without me and I’d miss seeing him have fun. Two, I worry about him anyway, and he was going to be out of cell phone service for 24+ hours. What if he runs? What if they can’t catch up to him? What if he gets sick? What if he misses me? What if he won’t go to sleep without me? What if there are bears? (That is a legit thing, because bears are real, people.)
Also, they were happy tears. Happy for him that he was headed to do something that he really enjoys. Happy that he is able to go with Grandma and Grandpa. Happy that they want to take him, even though it’s making more work for them. Happy that we have help and support from our family. Happy that Curtis and I get to spend some alone time with Finn, doing things that he likes to do.
Colin had a great time, just look at these pictures:
Finley also had a great time too (but he missed his little brother!):
A Trip to Aunt Brittany’s
We took the boys to see their aunt, uncle, and cousin this weekend. They have horses, and I knew Colin would love them since he’s always trying to ride the dog…and all of his animal toys, lol.
Both boys loved it, and Finley says we are getting a horse now. We shall see about that, Finn Man!
Hippotherapy (that’s therapy with horses, not a hippopotamus!) is actually something that many people on the spectrum can benefit from. A quick Google search lists several benefits: improved motor skills, balance, sensory, language, and emotional benefits.
Looks like Aunt Brittany and Uncle Brendan will be doing some riding lessons with these two in the future!
AAC Awareness Month
Since we now have all these random days to celebrate like National Donut Day, National Boyfriend Day, etc. we basically get to celebrate something every day of the year.
October is Pregnancy and Infant Loss Awareness month. I also just read that it is also AAC Awareness Month. These two subjects are very near and dear to my heart.
I want to talk about AAC Awareness month today.
AAC stands for “Augmentative and Alternative Communication.”
AAC is basically anything that you use to communicate that isn’t speaking. Writing, signing, gesturing, facial expressions, picture exchange, or a device like Colin uses.
I recently had another professional tell me that a device is not a language…
I was taken aback, upset, and angry. The use of a communication device has given Colin a way to communicate with us. It has eased his frustrations, and allowed us to know what he wants. It has given him language. (And that language is English, BTW, he just accesses it through a device. Specifically, it uses the Unity language system, based on core words, but I digress…)
This particular incident made me realize that I need to step up my advocacy game and educate.
Colin’s uses an iPad as his communication device. We bought the app LAMP Words for Life by Prentke Romich. You can view it here. Here is the link to it in iTunes: LAMP on iTunes. And just FYI – it is only $150 today (Oct 6, 2018). We paid $300 for it last spring!
I was packing Colin’s school bag the other day. I couldn’t find his device. It had just been on the ottoman, where in the world had it gone? My mother-in-law and I looked everywhere. It was gone. I thought I was losing my mind. Colin had just had it because he asked to go downstairs….I went downstairs, and there it was: he had carried it down there with him, and it was right there with all of his toys. I just love that he wants his device. Right now, it is his voice.
I encourage all of you to see AAC for what it is – communication. It doesn’t matter how we communicate, what matters is that we can communicate. If you can speak, good for you! But for many people, speaking is difficult, or even impossible. I am so thankful that we live in an age where we have so many communication options available to us and those we love.
Big news!
No, I’m not pregnant.
Why does everyone always assume that’s what “big news” means? (Be honest, you kinda thought that maybe that’s what I meant, didn’t you?)
No, my big news is this:
My first children’s book is now available!
Click here to get your copy: Artie is Awesome
That saying is true, “I thought I would teach my child about the world, but instead I have to teach the world about my child.” So here I am.
What better time to teach people about autism than when they’re young?! Kids are impressionable, but they are also way smarter and more understanding than most adults give them credit for.
So I wrote this book to teach little ones about autism using words they understand and situations they can relate to.
I also thought it would be cool for kids like Colin to see a book with a main character who is like them.
This is a rhyming book, because the geek in me loves to read rhyming books best. Plus, rhyming is great for phonemic awareness and literacy skills! #speechgeek
The illustrations are seriously beautiful and turned out so much better than I imagined. Get yours on Amazon today!