Month: May 2019

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.