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How God Works

I hope you didn’t start reading this post in hopes that I would share “how God works,” because I will never comprehend how God works….but trust me when I say, that God had this story in the works long before I even knew it…
For three years, I worried about Colin.  I wondered what was wrong, would he get better, what could I do to help, what would his future look like…I hoped and prayed that it wasn’t autism.  I begged God to fix him, to please take away whatever it was.
But God didn’t fix him. 
I was angry and upset.  Why Colin?  Why would God give me this one thing that I said I couldn’t handle?  I had prayed so hard and fervently, why hadn’t He answered my prayers?
Then Colin got his official autism diagnosis a year ago.  He has made so much progress and changed so much in the last year.
 I’ve changed too. 
I started this blog:  I reached other autism parents.  I was sharing stories that other parents related to.  I was educating those who had no idea what autism was, what it can look like, and how it impacts an entire family.   I was advocating for those who needed it, being a voice for Colin when he doesn’t have one. 
Then I wrote a book to share our story.  
Then I wrote a children’s book to reach a different audience (the little people who are our future for acceptance of those with autism).  
Recently, I have been burdened by the lack of services available to children in our state.  With autism prevalence increasing this year, there will be more children who need services that are already scarcely available…I get sick just thinking about the number of children sitting on waiting lists, and even worse, those who don’t even know that these therapies are available and highly effective.  How many children are we literally failing because of this?  How many children will not know their true potential because they are not receiving the services that they desperately need? 
I told Curtis awhile back, “I wish someone would just pay me to write and talk about autism.  Is that too much to ask for?”
Cue God.
Two weeks after I told Curtis about my (what I thought to be an unrealistic) dream, I was offered a job.
I am now the state director of the Mountaineer Autism Project (MAP).  MAP is a nonprofit organization here in West Virginia that aims to improve early detection and diagnosis of autism and supports early, intensive behavioral intervention (ABA).  MAP provides advocacy, family support, and informational resources.


Wow.  Can we say “Dream job?”  
This is a God thing, for sure.
I had no idea that this was even a position to be had.  I didn’t know that there was really a job out there that would allow me to write and speak in order to improve the lives of those on the spectrum.  The mission statement of MAP is literally my description of what I wanted to do…and this literally just fell into my lap.  
Again, WOW.  
This isn’t just a job to me.  This is my passion.  
The day before this offer came through, my mom looked at Colin and said, “Look at him.  You have changed so many lives with that one.”
It is amazing how hindsight is 20/20.  
Six years ago, the thought of having a child with autism scared me to death.
Then God gave me Colin…with autism.
As the last year has played out, I have started to see God’s plan unfold.  
He had this planned out long before Colin was even born.  He gave me Colin, with autism.  That in itself is such a blessing – because I prayed to not have a child with autism…but look at what an amazing blessing I would have missed out on had God answered that prayer. 
Not only is God using me to help Colin, but He is using me to help others who are like him.  He is using me to help those who aren’t as fortunate as we have been (because I am well aware that things have unfolded so perfectly for us, and others aren’t always as blessed).  
God knew all along.  He had this planned for me.  I like to reference others’ words of wisdom in my blog, and today I’m stealing one from Mr. Garth Brooks:
Sometimes I thank God for unanswered prayers
Remember when you’re talking to The Man upstairs
Just because He doesn’t answer Doesn’t mean He don’t care
Some of God’s greatest gifts are Unaswered Prayers
We can’t always see God’s will, and that’s hard.  It isn’t fun, and it’s really difficult for a planner like me.  He knows, though.  He sees the whole picture.  He has a plan.  He doesn’t always answer our prayers because He knows that they aren’t in our best interest.  That’s a tough pill to swallow and hard to accept sometimes.  There were days (and still are some days) where autism and the grief it brings just engulfs me.  I question “why,” and I might not ever know why in this life.  (But I have a sneaking suspicion that God knew my big-mouthed self could be used in this matter…)
 He is always there for us.  No, I couldn’t handle autism – but He can.  
Our pastor asked today, “How often do you get mad when God’s will isn’t done?  ……How often do you get mad when your own will isn’t done?” 

Yep, that one stepped on my toes.  I am selfish, like we all are.  I wanted what I thought was best for me.  But in this situation, I can see how God is using my greatest fear and using it for good.  He has turned my nightmare into my mission.  He has taken this thing – this thing that I thought would be the end of the life I always wanted – and He’s using it to put me on a different path – HIS path.  Right where I was always meant to be.  

I am ready to do big things for children with autism in the state of West Virginia.  I ask for all of your support and prayers as I embark on this new, exciting journey.  This will definitely be a learning process for me, but I am so excited for the next leg of our autism journey.  

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My Broken Mommy Heart

My mom always told me that parenting just gets harder as your kids grow up.  She told me that the first time your kid gets their feelings hurt at school, it’s just awful.  You just want to fix it, but you can’t. 

Last week, a little boy at the Dollar Tree broke my mommy heart.
I try to make special trips to stores like this, just as an opportunity for Colin to practice being at the store.  He was so happy, playing with the little stuffed monkeys he had found.  He was making his happy sounds, and all was right in his world. 

This mom started calling her son to her.  I knew what was happening:  she was trying to get her kid away from my kid.  The little boy, maybe seven or eight years old said to his mom, “I wasn’t doing anything.  He’s weird.  He sounds like….” 

I hurried in the other direction, because I didn’t want to hear the rest of that conversation.  I didn’t want to hear what he said, and I really didn’t want to hear what his mom had to say.  I was afraid of what I might hear.  The angry part of me wanted to chase that kid down and say, “Hey, you’re mean!”  But then I remembered that I’m 33 years old and too old to act like a seven year old!  Some days, the battle just isn’t worth fighting…
Colin wasn’t paying attention to them, he was blissfully happy with his new toys.  He’s so smart though, guys.  He understands what people say to him.  He understands what people say about him.  He didn’t hear this at all, but I did…and it broke my heart. 

I was on the verge of tears, but I didn’t want him to know that.  That’s something that I’ve become very conscious of over the last year.  I don’t want him to see me being sad, because he doesn’t make me sad.  How other people treat him (or others on the spectrum), well, that often makes me sad. 
In a way, we live in our own little bubble.   We have family and friends who love him.  Church family who understand, accept, and love him.  We have his school where everyone is also a part of “the tribe.”  I sometimes forget that others don’t “get it.”  Then things like this happen and my bubble bursts.  

I wasn’t going to share this story, because it upset me so.  I don’t really want to remember stories like 
this either. I do, however, want to educate others, and this is definitely a teachable moment. 
You might ask me, “Well, what should the mom and son have done in this situation?”
Ask me about Colin!  Introduce yourself and ask, “Why does he make that sound?” Or whatever the question might be.  Then I can explain it to you, and you’ll understand.  Exposure.  Understanding.  Awareness.  Acceptance. 

Finley got his first-ever report card this week.  He had “Satisfactory” on his social skills and work habits.  Listed were all of the letters and numbers he could identify.  A list of sight words he can read.  His teacher had written a couple of little notes:
Finley is a great student.  He is very kind to others.
Do you know what I am most proud of?  

“He is very kind to others.”
I am certain that Finley is kind to others because of his brother.  Having a brother with special needs has made him even more compassionate than he was already.  I’ve said this before and I’m going to say it again:  we could all stand to be a little more like Finley.  

I want to stress this:  be kind.  Teach kindness to your children. 
I’m not saying that you need to like everyone, because that’s not realistic – but you can be nice to everyone!  My son is different, yes, but different isn’t weird.  Before you say something hurtful, remember this: he has feelings, and so does his emotional mommy. 

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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.


 I hope that others look at Colin and see his potential.  I hope they realize that he is different, but not second rate.  I hope that Colin’s successes show others how important it is for us to see value in people rather than just seeing a diagnosis.  

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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!): 


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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!

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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.

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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!