Month: April 2018

You might be wondering why I decided to write a book….you really might be wondering why I would write about things that are so personal.

Allow me to answer those questions!

I have talked about this before, and I also addressed it in the book.  I feel like I have gone through these tough experiences (infertility and now autism), and these trials have become my testimony.  I know what it is like to live these things day in and day out…it honestly shapes the person that you become.  What good is a testimony if you keep it hidden from the world?!

People kept telling me that I was a good writer, or that I said things that they felt, but were unable to put into words.  I thought, “Okay, maybe this is my sign to just write that book!”

There are things in this book that I’m not proud – infertility took me to some pretty dark places about seven years ago.  Now, I have some bad days with autism…but….the good days FAR outweigh the bad.

I feel that our story is worth sharing, because it might speak to someone who is going through the same trials.  Infertility and autism can be very isolating.  You aren’t alone – but I get it – it sometimes feels that way.

I hope that you read this book and learn some things.  Maybe you’ll learn how to talk to a friend who struggles to get pregnant.  Maybe you’ll learn what to say to the coworker who just had a miscarriage.  Maybe you will gain some insight into the autism world (newsflash: it doesn’t just exist during the month of April!).  I hope that you come to accept those with autism and love them for the wonderful people that they are and see them for more than their diagnosis.

Thank you all for reading!  (Clickable link below!)

For someone who never reads, I am on a role this year!!

I finally finished The Verbal Behavior Approach by Mary Lynch Barbera.  I definitely recommend this one! 

The author was a nurse.  Then her son was diagnosed with autism.  She is now a Board Certified Behavior Analyst (BCBA), author, lecturer, advocate, you name it.  She went alllll in.  Because she is a parent, I think this book is much easier to read than some, because she knows how to write for people (like us!) who don’t have an ABA background. 

The Verbal Behavior Approach is a form of ABA.  She explains everything very well and includes examples.  There is even an appendix in the back for parents to complete.  You assess your child’s skills and build a plan off of that. 

I think she is also very realistic too.  She knows that ABA isn’t “fixing” everything, but it does help kids make progress and reach their full potential. 

She explains that ABA works for anyone, not just severely autistic children.  (PS, there is a chapter on potty training, and I know people often wonder how in the world to potty train their special needs children.) 

As an SLP, it helped me break down “receptive language” and “expressive language” into more defined categories – it actually made me question, “Why don’t SLPs do this anyway?!”  It just makes sense. 

The title is a clickable link above if you are interested in buying this book.  It could easily be read in a day or two, I just got busy and didn’t do that! 

Elopement: to run away.

Coyote: wild animal that charged Colin this weekend.

Yep, you read that right.  A large coyote charged at my four year old this weekend.

We live next my family’s farm.  We went on a walk Saturday. The boys are never, ever out of our sight, especially when we are outside.  They stayed within a few steps us as we walked along the paths in the woods.  We made it to an open field.  I would say it’s about the length of a football field. 

Colin ran up a little ways in front of us.  Because we were in the open field, we could see him, and let him stay a little ahead of us.  He would turn around every few seconds to make sure that we were still behind him, which is a good  (and new) skill. 

Elopement, or running away, is often a problem for autism families.  Many kids on the spectrum don’t have an understanding of boundaries.  They also have no fear.  “Getting lost” isn’t really a concern for them.  For this reason, we have to keep eyes on Colin 24/7.  If he were to get away from us, he would not respond to us calling his name.  He would be lost. 

As we got to the edge of the field, we caught up to him.  I was back a little ways with Finley.  Curtis caught up to Colin.  We started walking up the hill. 

Curtis and Colin made it up the hill and around a little bend, just out of my view.  It was at that point that a huge coyote came charging down the road, right toward Colin.  Curtis grabbed Colin and put him behind him.  He pulled his gun out, but the thing turned and ran toward the interstate. 

He looks down at me and calmly says, “there’s a coyote up here.”

Finn flipped out and started crying.  It really scared him.  After Curtis told me what exactly had happened, I was a little scared too.

Looking back, we think the coyote had been at the top of the hill.  It had seen Colin walking just up ahead of us. And it thought he was something little, and alone.  It was coming after him. 

How scary? Ahh…

This is why elopement can be scary.  What if we hadn’t stayed right with Colin? What if he got away from us and went into the woods by himself?  What if I blinked and he got out of my sight? 

He is four and he’s fast.  I was running at a complete sprint the other day just to catch up to him as we played in our yard.  I have to be in decent shape in order to keep him safe.  I have to be able to run at any given time. 

Asic running shoes and guns, ready to go at our house! Locked, loaded, and running.  Always. 

I just finished Temple Grandin’s Thinking in Pictures, and I highly recommend it!

I have always thought that Dr. Grandin is amazing.  To hear from an autistic person how their mind works is just fascinating.  If you don’t know of Temple Grandin, you need to Google her!

She says that she thinks like an animal, and that has helped her revolutionize the cattle industry.  She has designed systems that keep the cattle calm as they go to the slaughter.  She is kind of a big deal.

She is also autistic.  In this book, she explains how she thinks in pictures.  She gives a great example about church steeples.  If someone says, “steeple,” you likely think of a generic church steeple.  She does not.  She thinks of specific church steeples that she has seen in her life.  The very first one she ever saw as a child…famous steeples….etc.  She says that her mind works like a Google Image Search.

She thinks in associations rather than logically.  She gives an example from another person with autism.  He would say, “Planes fly high because I am not scared of them.”  Logically, this makes no sense…but he was thinking in associations:

He was not afraid of heights.
Planes fly high in the sky.
Therefore, planes fly high because he is not scared.

One girl would say “french toast” when she was happy.  That means nothing to anyone else, but it did to her…why?  Because she had once had french toast when she felt happy.  To her, “french toast” represented the feeling of being happy.

This realization is so enlightening.  One, because it helps me understand so many of the children I have worked with in the past.  Two, it should tell us this:  autistic brains are different.  This difference means that they are not likely to learn the same way a neurotypical brain will learn.

She explains other things, like sensory processing disorder.  If you have a hard time grasping what SPD is, then read this book!  She gives so many different examples.  For example, some autistic adults explained that they have monochannel system systems.  That means that they can only use one sense at a time.  If they watch you speak, then they can’t hear you.  In order to hear what you are say, they can’t look at you.

Dr. Grandin also highlights the fact that many “temper tantrums” are not tantrums at all, but purely a reaction to sensory overload.  I have always said that about Colin, and I was glad to hear an expert in autism say the same thing.

If you are looking for a good autism book, I would say that this one is a must-read.  Here is a clickable link to her book:

I keep a journal on everything Colin.  Any time that I am tryng to figure something out, I document.  He’s not sleeping?  Okay, let’s see why. 

What did he eat that day?

Did he eat gluten or dairy without his enzymes?

 Did he eat anything all?! 

Was he sick? 

Did he play much and wear himself out?

By documenting everything I have been able to find patterns and figure out the cause behind certain behaviors, etc.  Another great benefit is that I can look back later and see all of the progress that he’s made!

Regarding speech, his babbling/jargon didn’t start until a year and a half ago.  I had not heard his “real” voice (other than screams and squeals) until he was two and half years old.  Now at four, he jabbers all the time.  He’s also saying some words and attempting to say so many new things. 

Receptive language, what he understands, has skyrocketed in the last two years.  He went from following zero directions to follow some one (and two!) step directions.  He will follow novel (new) commands and just blow my mind, like, “Did you just understand that and follow through?!”  He truly does understand so much of what he hears, and I never would have thought that just two years ago. 

Expressively, he used to take us to things and point or reach and scream for it.  He did this just three months ago!  Now, he uses his AAC device to tell us what he wants.  He can do a 3-click navigation to make choices (eat-snacks-popsicles).  People see him using his device and say, “He is really smart.”  Yes, he is smart.  He always has been – he just needed help getting it out and showing everyone!

Just last year, I wrote that he held my hand in a parking lot – this was HUGE!!  He used to just run from me, so in situations where he could get hurt – like a parking lot – I just had to carry him.  Just yesterday, he took off running to Grandma’s house.  He stopped, turned, ran back to me, and grabbed my hand.  We ran to Grandma’s house hand in hand.

This time last year, he would go to Grandma’s house, drink a juice, then he was ready to leave.  Yesterday he spent hours at Grandma’s house looking for treasures (old Beanie Babies) and sat on the bed while we worked on setting up a bedroom in a spare room.  (They don’t call him “King Colin” at ABA for nothing!)

Just six months ago, I had not enrolled him in speech therapy, because I knew that he was not ready for that. Today, he goes to speech once a week and gets excited when we pull into the parking lot. 

So many changes.  They might seem small, but they are progress in the right direction.  The more experiences he has, the more he learns.  The more he learns, the more doors open for him.  I love watching him experience and learn new things.  He makes me smile.

I’ve been absent for a while, and I want to share a story today.

We lost my Pawpaw to cancer on Thursday.  He was diagnosed with cholangiocarcinoma (bile duct cancer) in January.  This is a very rare, very aggressive cancer.  He lived 11 weeks after the diagnosis.

He wanted to do treatments even though the doctor told him that they would not cure him.  After one treatment, he had to stop because it caused congestive heart failure and also made him diabetic.  He was the strongest, hardest-working, most contrary person I have ever known.

He received this diagnosis in January.  We were just getting ready to leave for our Disney vacation.  I felt really bad leaving, knowing the situation I was leaving behind at home.  Everyone assured me that things would be okay, we should go and enjoy our trip.

While at Disney, I decided to get Mawmaw and Pawpaw a puzzle.  They have always loved puzzles, so I thought that would be the best gift.  They could build this puzzle, we would glue it and hang it in the boys’ playroom.  They would always have that puzzle.  It would remind them of our fun trip, and they would know that Mawmaw and Pawpaw built it for them.

Pawpaw was strong, and he tried to remain as active as possible.  Just two weeks ago, he was climbing a ladder into the attic!  We also had someone snooping around our house two weeks ago. Pawpaw stopped the guy in the driveway and shot his gun into the ground, just to prove to him that it was loaded and he wasn’t afraid to use it.  That guy hasn’t been back since!

Pawpaw had really slowed down and was staying inside more and more.  When this happened, Mawmaw got out this puzzle.  Everyone who came in to see him would work on it.  It was the hardest puzzle ever because all the colors were so similar, and every single piece fit in every spot!  Everyone in the family had worked on this puzzle…except Pawpaw.  Mawmaw even took two pieces over to him and said, “These pieces go together, just stick them back together.”  He couldn’t even do that.

When we got down to the end, we had one piece missing.  I had run the vacuum, so we checked the trash to see if it had been sucked up.  Mawmaw looked under tables, and my brother checked all of the floor vents.  No puzzle piece.  We even asked Pawpaw if he had hidden the piece, because he was famous for doing that, as he liked to put in the last piece of a puzzle.  We resigned ourselves to the fact that the missing piece would represent the missing piece of our family after Pawpaw passed on. That was about a week and half ago.

As I have said, Pawpaw was a fighter.  I was supposed to go to Pittsburgh to see Temple Grandin on Friday.  I talked to his nurse, and she said that I should go.  He would probably make it through the weekend.

As I walked out the door on Thursday at 11:15, I said, “I love you, Pawpaw.”

He said, “Well I love you too.”

I said, “Don’t go anywhere until I get back.”

He said, “Well I’m not in any hurry.”

At 12:15, my mom called to tell me that I needed to get home RIGHT NOW.  For anyone who wants to know, my car will hit 100 mph.  Sorry, Law Inforcement Guy that I passed on the way home.  I had to get to home.

Pawpaw went home to Jesus that afternoon.  I was there holding his hand, and I am so glad I was there for him.  Temple Grandin can wait, Pawpaw couldn’t – he had suddenly gotten into a pretty big hurry.

About thirty minutes after he passed, my brother walked into the room holding that missing puzzle piece.  He had found it sitting smack dab in the middle of the couch.  Everyone had sat on the couch in the last week and a half.  I had just walked in twenty minutes before, looked at the couch debating where to sit, and there had been nothing there.

We all cried.  I said that Pawpaw got to Heaven and said, “God, where is that puzzle piece?  I’m going to put that piece in!”

I realize that it had probably been stuck in the cushion, or wrapped up in a blanket, but the fact that it showed up right after Pawpaw met Jesus, that was special.

His nurse had been sitting in that spot just prior to the piece being found.  I truly believe that she was Heaven-sent.  She was truly a wonderful, caring person who helped us all through the most horrible day.  Want to know something extra special about her?  She had also sat with my other Pawpaw 18 years ago as he died of cancer.  This lady was special.  Maybe, just maybe, she was the angel that God used to bring us that puzzle piece.

Today is April 2nd, which is Light It Blue Day for Autism Awareness and Acceptance.  You know how important this cause is to me.  The irony is not lost on me – the puzzle piece now has so many special meanings to our family.

Pawpaw loved my boys so very much, and they loved him.  I know that he always worried about Colin.  He always said, “I just wish the little feller could talk.”  I like to think that, this puzzle piece coming back to us exactly when it did, was a message from Pawpaw.  You see, he had been talking to Jesus for a while at that point.  I am sure that Colin had come up in their conversation.  I think Pawpaw was sending us a message:  Our puzzle is now complete, and Colin will be just fine.