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• I would only feed them homemade foods that were organic and healthy.  No fast food for my little angels.   
• I would limit screen time and keep them in full supply of crafting materials and educational activities.  
• I would have them on strict sleep schedules in their own beds.  
• I would continue to exercise and be the fit mom who looked good in her mom jeans.  
• I would host the best birthday parties and play dates – everyone would want to come to our house!  
• I’d have my kids in every activity available – soccer to Sunday School – we would do it all! 
• I would be the perfect PTO/Pinterest mom who was the envy of all other moms. 

“Self care” is all the buzz in parenting right now.

It’s definitely “a thing” in special needs parenting.  It’s almost as if just writing the words “self care” feels like I’ve jumped on the bandwagon.

…but it’s definitely a thing, and it’s an important thing.

When Colin was diagnosed almost two years ago, the autism trained pulled up and I took the front row seat.  (As you might guess, trains are a thing at our house right now!)

This time last year, my desire to advocate and speak up for Colin and his needs amped up, and I felt the need to help more kids.  I was seeing the amazing progress that Colin was making due to ABA, and I wanted all kids to have access to this life-changing intervention.

In the fall, I said to my husband, “I just want to write and for someone to pay me to talk about autism, is that too much to ask for?”

Two weeks later I had a job offer to talk about autism.

I just knew that it was exactly what I wanted to do.  My life was going in this completely different direction than I had ever planned on, but it just felt right, I was meant to do this.

That was about eight months ago.

In January, I got sick, and I just couldn’t get better.

My illness gradually turned into a full-body rash.  It was itchy, unsightly, annoying, and a tad bit worrisome.  Four different doctors didn’t know what was wrong with me.  When we went to Disney, I wore pants so as not to freak anyone out with my unknown rash – I didn’t want to be kicked out of the Happiest Place on Earth!  I hoped that ignoring it would make it go away – you know, like when your car makes a weird noise so you just turn up the radio to drain out said noise…that didn’t work.

As time passed, the rash spread more and got worse.  I was so itchy that I couldn’t sleep at night.

From January to April, I was plagued with this rash.

From January to April, I was also pretty stressed because I had taken on too much:

I was working my part time school SLP job across three different schools.  That meant driving between schools, doing therapy and evaluations, and meeting IEP deadlines.

I had my early intervention SLP position with Birth to Three.

I was the state director of a nonprofit.  I was trying to plan a Light It Up Blue Event, an annual conference, and find sponsors and donors for said events.

I was promoting my children’s book and going to different schools to read for Autism Awareness Month.

I am also a mom to two kids.

One of those kids has autism and attends ABA daily, and the clinic is almost an hour from our home.

Throw in a marriage, soccer practice, church, grocery shopping, cleaning house, wanting to write more books and keep up with my blog….the list goes on and on.

Now, I have a great support system.  My husband has always helped around the house, he does so much for me and the kids (including making my coffee every morning, even though he doesn’t drink coffee himself.)  My dad and mother in law help get Colin to school when I’m working.  My Mawmaw does my laundry for me on the days she helps babysit.  My mom is always willing to take the boys on adventures with us.

I’m spoiled and blessed, and I know all of this.

…but I’m still not supermom….even though I tried and wanted so desperately to be.

I started to tell people “no” and “not yet” when they asked me to do things.  They were things that I really wanted to do (like serve on a different organization’s board and record a continuing education course for an SLP/BCBA website), but I knew that I had taken on too much.  I thought, “Oh, this is what they call “self care.”  I just need to start saying “no” more often, for my sanity.

In April, when my stress level was at an all time high, I got a diagnosis for myself: guttate psoriasis.  This is an autoimmune disease that is usually triggered by strep (yep, had that!) and made worse by stress (yep, had plenty of that too).

About that time, a wise friend said she was worried about me.  She said, “I’ve seen moms like you push so hard that they burn out.”

Until she said that to me, I honestly didn’t know that burn out was an option…but it hit me like a ton of bricks – I was setting myself up for exactly that.

You see, I had taken the weight of the autism world onto my shoulders.  I felt that it was my responsibility to fix all the things wrong in the world.  For someone whose kid was getting the best services possible, I felt that it was my duty to share that with the rest of world – let them know what is possible with the right services.  And not just stop there, but work to make sure that more kids can have access to ABA in the future.

And the weight of the whole autism world…it’s really, really, heavy.

I’ve had moments recently where I’ve thought, “I don’t want to be the champion of all of the things…I want someone else to take over.  I just want to be a normal person who lives my life and just thinks/worries about my own kids and their needs.  And for now, I hope that’s okay, because it’s what I need to do.  I’m not finished advocating, fighting, and educating…I’m just stepping back for a while.

This is me stepping back.  I’m saying “no.”  I’m taking care of me, but also taking care of my family.  When your very wise six year old says, “Mommy, I want you to quit a job,” you don’t brush it off.  I don’t want my kids to look back at their childhood and think that Mommy just worked all the time.  They’re growing up fast, and I don’t want to miss it.

I kept having this phrase pop into my head…”take a leap of faith.”  I had no idea what that meant.  I fretted about it for a while, and I waited.  And waited.  And waited.  Then, things just started to unfold, and here I am.  “Take a leap of faith,” didn’t mean what I initially thought it did.  It ended up meaning, “This thing that is so important to you can’t be your whole focus right now.”  Honestly, that’s not the answer that I wanted it to be…I was hoping and praying for something else…but it just turned out different than I thought.  Once I made this decision though, I felt peace.  Peace is good.  I know it’s the right decision right now.

Yes, I still want to help other kids.  I want to help make ABA more accessible to every child in the state of West Virginia…but that’s a really heavy load for me right now…and that’s also really hard for me to admit right now, but my goal here is total transparency.  While I feel like this autism life is my calling and purpose, I have to be present in all the parts of my life. 

I also want people to know that absolutely nobody has it all together.  I’ve gotten frustrated over the last few months when people would say, “You’re supermom, how do you do it all?”  Well, I was doing it at the cost of my health.  I was doing it at the cost of my happiness.  I was stressed.  I felt pressure to do and be everything, and it was too much.  I had a son telling me that I worked too much.  What you saw on the outside was a mom getting everything done, but on the inside, I’ve been a stressed out, worried, not-good-enough, part-time-everything, itchy, over-eater (because, ya know, I eat my feelings). 

While I want to do, be, and fix all – I’m learning my own limitations.  It’s just taken me 33 years to see it.  Along with “self care” I’m working on “self awareness.”  In this self awareness journey, I truly am realizing that I’m not good at everything, no matter how much I want to be…and that’s (going to be) okay.

Self care doesn’t always look the same for all of us.  For some, it might look a spa day.  For some, it might look like a nap.  For others, it could look like coffee with a friend.  For some of us, it means giving up things that we are really passionate about because we just realize that we can’t do it all.  I won’t lie, there’s some feelings of guilt with these hard decisions, but that’s something else I’m working on too. 

So, if I seem a little quieter than usual, it’s intentional and necessary right now.  It’s for my health, it’s for my sanity, and for my family.  I’m learning that I’m just one person, and I just can’t do it all.  It’s called self care, and it’s this new thing I’m trying out.

Before I knew that it was autism, I wondered what was wrong.

Before I knew it was autism, so many questions, unknowns, and fears filled my thoughts, all with one main concern – would you be okay?

Now I know it’s autism, and guess what?  You’re okay.  We are all okay.   I know that now.

A big, important, amazing thing happened at our house last night:

My boys played together.

If you are a parent, you might be thinking, “Uh, okay? Isn’t that what siblings do?”  If your child has autism, though, you know how monumental this is.

My boys are 12 months apart.  I had dreams for them.  They’d be best friends.  They would entertain each other, only fighting occasionally.  They would look out for each other, and would only rarely be annoyed with one another.  They would have the perfect brotherly relationship turned friendship.

Then autism.

When they were younger, I kept waiting for that magical age everyone told me about. You know, the age when they would play together, entertaining themselves with imaginary sword fights and dragon slaying.

…but my kids didn’t even interact with each other.  Oh, Finley wanted to play, but Colin didn’t really know how to.  I remember when Finley, about three years old, cried saying, “I just want Colin to play with me.”

Do you know how heartbreaking that is?  To see your son crying because he wants so badly to be able to play with his brother? An interaction that should come so easily, yet it as so hard for my son….and also how heartbreaking that is as a mom?  Dreaming that your children would have this built-in playmate, a forever friend.  To see your baby struggling to interact with his brother, it just hurts your heart.  

If your children easily play together, I bet this is hard for you to understand. It might even be unfathomable to you. I have described it before as raising two only children.  Raising siblings who don’t often enter each other’s world.

As Colin got older, I could see that he wanted to play.  He was interested in his brother, but he didn’t really know what to do with that.  He would play beside him instead of with him.  In the therapy world we call that “parallel play.”  

They are now five and six years old.  More and more recently, I’ve had glimpses into a life where my kids can play together.  Jumping on the trampoline together.  Painting side by side.  Playing chase through the house.

The amazing thing about last night is that Colin initiated playing with Finley.  He walked up to his brother and said, “Pinwey.” (Which is how he says Finley, and it is the cutest thing in the whole wide world.)  

I watched them play together for almost an hour.  Playing in their playroom, then giving each other piggy back rides.  All unprompted and not even a bit mediated by mom.  When Colin wanted his brother to climb on his back, he would get down on all fours, look him directly in the eye and say, “Pinwey.”  I watched as Finley gently encouraged his brother to imitate his speech models.  I also watched as he pelted him with Nerf gun darts…and Colin loved every second of it.  


So often, I encourage Finley to get into his brother’s world.  He is so amazing at it.  He tries to engage him, he also helps chase him in the instances when he takes off running.  He’s the best big brother, always looking out for Colin.  Last night though, Colin left his little world and entered his brother’s.  I had two brothers in the same world, playing together.  

Last night gave me so much hope.  I’m thankful for Colin’s tremendous progress.  He’s come so far, and I know he will continue to do amazing things.  And truly, I was so happy for Finley, that he’s getting that brotherly playmate that he’s always wanted – that I’ve always wanted for him. 

I am “Mommy” to two little boys, Finley and Colin.  Colin has autism.  While autism doesn’t define him, it has affected me in ways that I didn’t know were possible. 

A while back, I was explaining how Applied Behavior Analysis (ABA) had been so beneficial for Colin.  I gushed about his progress and my hopes for the future.  I shared that our family life had greatly improved because of the intervention he was receiving.  I said that I wish all children had access to ABA.

This person looked at me and said, “Are you gonna be one of “those” parents someday?”

Sir, I am one of those parents…

…and I’m not sorry about it.

I’ve grown as a person and as a mom, and while I am sorry, it’s for different reasons:

• I’m sorry that the world isn’t always welcoming to those who are different.  
• I’m sorry that me fighting for my son is considered a nuisance to others.
• I’m sorry that I even have to fight for my son to get the things he needs in order to be successful in this life.
• I’m sorry that there are people out there who believe he deserves less than the best. 
• I’m sorry that not everyone has the access to treatments and resources that they need, requiring me to fight for said access.  
• I’m sorry that “advocacy” is seen as a “bad word” to people outside of the special needs community.
• I’m sorry that others don’t see the need for change that so many of us are desperately striving to achieve.

Many of us like to plan things.  Plan trips, plan meals, plan every detail of our lives.  Lots of us make lists just to check things off and feel accomplished.

Then autism came into our lives.

My son was diagnosed with Autism Spectrum Disorder (ASD) at the age of three.  Since then, life looks different than I ever planned, and I have learned a valuable lesson:

 I am not in control, God is.  

I tried to pray it away.  I begged God to “just take it away.  Fix him.  Let him wake up and talk.  Take away his struggles.”

God was silent…or so I thought.

I so desperately wanted my son to “be okay.”  I cried.  I begged some more….still no miraculous over-night changes.

Was God even listening to my prayers?

Colin is now five, and I have learned some great lessons in the last year and half.

God is listening, and He did hear my prayers…His timing just wasn’t my timing.  

I wanted Colin to wake up one morning and say, “Good morning, Mommy.  How was your sleep?”  While that would have been a wonderful miracle, I see that God is still working a miracle, just not an over-night one.  Colin is learning to talk.  He now has an augmentative alternative communication (AAC) device that he uses to communicate with us.  He is making tremendous progress with ABA services, and his progress is nothing short of miraculous.

God uses our darkest hours to refine and use us.

This is one that many people struggle with, and I would be lying if I said I hadn’t as well.  It is that age-old question of, “Why do bad things happen to good people?”  While I don’t know the answer to that question, I do know that Colin’s autism has ultimately changed me for the better.  I am more understanding, more compassionate, and more accepting of others’ differences.

A new friend recently said to me, “Colin’s life has such great purpose.  His story is touching and changing so many other lives.  The two of you were meant to be.”  Maybe, just maybe, God gave Colin to us (with autism) because He has a higher purpose for us.  Maybe, just maybe, we will be able to bring about change – awareness, acceptance, love.  His diagnosis wasn’t the end of our lives – it was just the beginning of a new journey.  This new journey has bumps and challenges that I would never have chosen for our lives, but I know that God has a bigger plan and will use those difficult times to refine us.

God had answered my prayers long before I even prayed them.

When Colin was six months old, I started praying for healing.  By one year old, my prayers became more fervent.  By 18 months, I was begging.  By two years old, I was desperate. I felt like God was not listening to my prayers, because I didn’t feel like I was getting any answers.

But God.

God had been laying the groundwork for Colin’s story long before he was even born.  He was placing people in my life who would be vital pieces to our story.

He sent me into the field of speech language pathology.

He gave me a professor who would place me at a certain outpatient clinic for a clinical rotation.

He sent me to that same facility after graduation for my first job.

There, He gave me a coworker, a trusted friend and music therapist, who would later guide me to a certain ABA clinic for Colin.

This ABC clinic, and the people there, have changed the trajectory of my son’s life, and mine as well.  God knew that I would need each one of these people to put us on the right path to get Colin the help that he needed.

But our story doesn’t end there.  Because of Colin’s success, I feel compelled to share his story.  I need to advocate for all children on the spectrum who deserve the same opportunity…and God knew this all along.  I share our story, I have written books.  This was always in His plan. For Colin, and for me.  He had orchestrated this, long before I was even born.

So, I have learned that I’m not in control.  No, it isn’t always easy, and I struggle with it from time to time…but I know that things will work out just as they are supposed to – because God’s got this.   

Lately, I’ve been thinking about how an autism diagnosis affects their siblings. 

My boys are 12 months apart.  Yes, they’re super close.  That was completely unplanned, but God has a sense of humor like that and sent Colin our way when our IVF baby was just four months old. 

(You think you can’t get pregnant?  Ha, watch this!” -God)

I won’t lie, the early years were difficult.  I had a newborn who didn’t sleep, and a toddler who didn’t sleep.  I had two little ones in diapers and on bottles.  I felt like I had twins, one was just a bigger, stronger, more mobile version. 

I knew, though, that having two little boys so close in age would be so much fun….one day.  You know, after the diapers, bottles, and sleepless nights ended.  They would be the best of friends and we would have so much fun.  I knew from day one that Finley was going to be a good big brother, little did I know that he would be the greatest big brother in the whole entire world ever in the history of big brothers.  (I feel like we should have that printed on a shirt for him!)

Finley is compassionate.  He just has the biggest little heart that I’ve ever seen in a such a tiny person.  He knows when to be gentle and encouraging, almost as if he has a sixth sense.  (And let me tell you, I’m so glad his sixth sense is compassion and not seeing dead people.  Mommy couldn’t handle that one!) 

Finley is understanding.  He just seems to know that things are harder for Colin, and he accepts it.  Now, does he sometimes yell and scream at his little brother when he hits the TV or steals his toys?  Yes, but that’s typical “I’m older than you and you have to do as I say because I’m six and you’re just five” big brother stuff.  I’m talking about those hard situations.  Like the times we have to leave a fun party early because Colin has met his max and is approaching meltdown mode….Finley never questions that we have to leave, because he understands.  He doesn’t bat an eye when Colin gets excited and starts to squeal and flap his hands, because he gets it.

If you’d see Finley out somewhere, you’d just think he’s a typical six year old.  And you wouldn’t be wrong.  He’s in kindergarten.  He loves cowboys and Fortnite.  He plays soccer and loves junk food.  But underneath all that typical stuff, he is such an old soul, wise beyond his years.  The way that he loves and cares for his brother can make my heart swell and also break at the same time. 

Colin’s communication skills have come a long way in the last year.  He uses an Augmentative Alternative Communication (AAC) device.  He uses LAMP Words for Life on an iPad.  AAC has truly opened up so many doors for him, giving him access to language that he just didn’t have a year ago.  In the last month, his speech has really started to emerge, which makes this speech language pathologist mom so excited. 

His big brother is excited about it too.

Finley was excited for me to check his backpack after school one day last week.  I pulled out a paper with some words written on it.  I “ohh’ed” and “ahh’ed” over his writing and spelling skills, because it really does blow me away that he can do this as a kindergartener (because I think I was probably just playing with glue when I was in kindergarten!). 

He looked at me so seriously and said, “I brought that for Colin. I want him to learn words.  I don’t want him to use a device to talk.”

Heart swells, then breaks.

I was so proud and just melting over the fact that he brought home something that he wanted to teach his brother….then my heart broke when he added, “I don’t want him to use a device to talk.”

…because if I’m honest with myself, that’s not what I wanted for my son either. 

When I was in graduate school, I remember doing an AAC project in my autism class.  I remember thinking, “I’ll never use this.  How many kids actually need an AAC device?”  How naive and inexperienced that girl was back then.  Little did I know that God was laying the framework for me 10 years ago, because my son would use AAC.  He would need it to communicate.  Oh, how I have been humbled on this autism journey.

…but no one wants that for their child.  No one plans for that.  No one really thinks about that, until you’re in the position of needing it.

So I completely understood and appreciated Finley’s honesty.  He wants his brother to talk to him.  I see the twinkle in Finn’s eyes when Colin runs up to him with a smile on his face and says, “Run, Finn,” and they take off playing chase. 

While I never would have wanted my child to struggle to talk, I am thankful.

•  I am thankful for the technology available to him.  We live in a time that AAC via an iPad is accessible to him, and I am so, so grateful that he has it. 

• I am thankful that he can communicate.  Truly, I always hope and pray for his speech to come, but…I am glad that he has access to language through AAC.  I am grateful that he can share his thoughts, feelings, wants, and needs with us, and AAC gives us a glimpse inside his beautiful mind. 

• I am so humbled by the lessons I have learned through our AAC journey.  I have come to realize that many people need AAC, and many more should have it too.  Communication is a basic human right, and every human being deserves it.  As an SLP, I know I probably shouldn’t admit all of this, but I’m just being honest.  While it isn’t something that I would have ever just chosen for my child, I am so overwhelmingly thankful for it.  I hope that makes sense….

…but it’s hard for me to explain all of these big emotions and truths to a six year old.  Really, though, I don’t think I have to explain it….because I truly believe that, deep down, he gets it too.  The knowing doesn’t always make it easier, though, particularly for a child. 

In moments like this, I realize just how much Colin’s diagnosis affects his brother.  Such a simple thing – wanting your brother to talk – is so, so huge.  So every time Colin gets a new word, I celebrate for him, but I also celebrate for Finley too. 

He is so proud of his brother, and I know that he will always love and support him.  Even if Colin uses a device for his whole life, I hope he knows that he has the support of his entire family, especially his big brother.  Colin is so blessed to have him.  He will encourage him on his autism journey, and he will accept him just as he is. 

….And he will always tattle on him and yell at him for throwing toys – just keeping him in line – like any good big brother would do.

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.