Month: April 2019

Advocacy: “public support for or recommendation of a particular cause or policy” (a quick Google search, 2019).

…but what does that really mean?

Advocacy is such an important topic to me  and it is one I never thought about much – until my son was diagnosed with autism.

Now, advocacy is a huge part of my life.

To me, advocating means standing up and speaking out for my son:

I want people to understand him and his needs.

I want him to have access to the things that his neurotypical brother has, and sometimes that means he needs accommodations to help him be successful in those situations.

I want him to be accepted for who he is.

As parents, it is our responsibility to take care of our children.  When your child has autism, “advocate” seems to come along with the territory.  We never got any specific training in the area of advocacy – our children didn’t come with an “Autism Parent/Advocate Handbook,” yet, here we are.

Advocacy isn’t always easy.  Sometimes, it makes you look like “the bad guy.” “That” parent.  The one who seems to always be fighting for something, demanding things for their child.

Am I “that” Parent?

Yes.  Yes I am.

I promise you, I’m not “trying to be difficult.”  I’m not asking for special treatment.  I just want my son to have the things he needs in order to be successful and happy…isn’t that what we all want as parents, regardless of an autism diagnosis or not?

Being an advocate often means fighting for change.  Changes at school, changes in the community, changes to policy.

Where does this change start, though?

It starts with me. It start a with you.

I love this quote from Dr. Seuss’ The Lorax:

“Unless someone like you cares a whole awful lot, nothing’s going to get better, it’s not.”

I cam say with 100% certainty that no one cares more about your child than you.  You are your child’s biggest advocate.  It is up to you to create change.

So how do you do that?

Tell people what your child needs.  Fight for it and make sure it happens.

Educate others about autism and accommodations.

Talk about the hard stuff, and  let people know how they can help.

Actions often speak louder than words, so show people what to do.  Be kind.  Be accommodating.  Be accepting.  Be helpful.

We can change the world for our kids, one act of advocacy at a time.

I woke up on Thursday morning with a little extra pep in my step.  Why, you wonder?

It was the day of Colin’s 6 month review at his ABA clinic!

We have seen SO MUCH progress at home, and I was excited to see it on paper in graph form.  (Yes, I’m a nerd.  #sorrynotsorry)

Guys, I was BLOWN AWAY!

Colin not only met most of his goals, he exceeded them:

One goal was for him to tact (label) 30 different items….he did 90.  He tripled the goal!

One goal was for him to identify an item in a field of 4 for 20 different item s…he has mastered 65.


Colin is talking so much lately, too.  He is jabbering all the time, and he has several perfect verbal productions (Mama, run, bus, bed, outside, Trolls, train, dog, Winnie, truck), but also soooo many super-close approximations (Play-Doh, strawberry, get me, train).  He is completing intraverbal statements (example: socks and shoes).  He is singing his ABC’s (my favorite part is LMNOP, he says, OOOO-P!). 

He is also READING.  We had no idea that he had letter-sound recognition until a couple of months ago, and he’s now reading some words like “truck” and “Elmo.”  He probably knows more too, I’m sure. 

He is definitely getting the hang of two-word phrases – he just used his device to say “open upstairs.” That’s where we keep the “extra” toys.  I swear that I’m hearing some phrases and sentences too.  He is still using his AAC device all the time, and its model is encouraging his spoken words. 

Just over a year ago, I wasn’t sure if this kind of progress was even possible for him.  He didn’t even sit in a chair then – how could he sit, attend, AND learn?

This is what Applied Behavior Analysis (ABA) has done for him – it taught him how to learn.

This is what can happen when you individualize and work at the child’s level and teach in a way that he or she can learn. 

This is why I sing ABA’s praises – because it has changed the trajectory of my son’s life. 

This is why I share and advocate – because so many kids like Colin could benefit from this intervention..and they deserve to have access to it. 

One thing that only a mom in my position would understand is this:  I feel like I have each foot in two different worlds: the autism world and the neurotypical world.  I have two sons -one who is neurotypical and one who has autism.

As we settled into Colin’s autism diagnosis, I became “an autism mom.”

An ABA Mom.

An Advocate Mom.

Those labels come with being Colin’s mom..and I love being Colin’s mom.  I am also Finley’s mom, and I love being his mom, too.  My work with the Mountaineer Autism Project is because of Colin, and I spend a lot of my time in the autism world.  Sometimes, though, I step out of the autism world into Finley’s neurotypical world.  Today in Finley’s world,  I gained a new title:  soccer mom.  

I always imagined that I’d be a soccer mom.  I played soccer, my brother played soccer.  We were a soccer family.

When given the choice between baseball and soccer, Finn chose soccer.  Thank goodness.  

I started to wonder how this would pan out.

Would Colin be able to go to his brother’s games?

Would we have to take turns going to games and staying home with Colin?

Would we need to get a babysitter for Colin?

Would Colin run if we tried to take him to a soccer game?

So many questions and things to think about/plan for.

Today was Finley’s first game (they actually played TWO games today!)  We braved it, and Colin came to the game.  I figured if it was too much, one of us would just have to take him and leave…but he completely surprised me.

Colin sat and watched his brother play his first soccer game.  He even clapped and yelled “yay!!” several times.

Colin made it through both games!  He maybe had my phone for a majority of it…it is possible that he drank a can of Coke and ate a bag of Cheetos…and he maybe found a dirt pile and played with a worm for a chunk of the game…but he was there.  He was happy to be there.   He listened to us when we said, “Come back,” or “sit down.”  He watched his brother play soccer, and Finley heard his little brother saying, “yay!” when everyone cheered. 

We got to do something as a family.  Finley was able to do his thing with the support of his whole family.  We didn’t have to switch out, or take turns with one of us missing parts of his game.  And his brother was there for him, and I know that meant so much to him.

If you don’t have a child with autism, you might take for granted that you can go to your child’s sporting event with their siblings in tow, but I don’t take it for granted.  This is something that, just a year ago, we wouldn’t have been able to do. 

I am so thankful for ABA and how much it has changed life for our family.

I am so thankful for Finley, that he pulls us out into the world when it might be easier to stay home.  I am thankful that he wants his brother there with him.  I’m also thankful for the laughs he provided today as he flossed on the soccer field, did cartwheels during the game, and when told to “steal the ball” he yelled “I’m too nice!”