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Remember how I’m a worrier and a planner?

I have been worrying about Colin and school since he was two years old.  Even then, I knew that he would struggle in a regular classroom setting.  After two years of worrying, he recently started ABA therapy.  He has been on the waiting list for months, and he just got started last week.  Finding this ABA center has been an answer to my prayers.

If you are interested in learning about ABA, Autism Speaks gives a good summary of the therapy, so I will direct you to their site.  Basically, behavior analysis is the science behind learning.  ABA therapy uses these principles to teach (or stop) behaviors.  It is a researched-backed therapy approach for those on the spectrum.  You might not know this, but it is successfully used for anyone, not just kids on the spectrum.  You just usually hear it being used with kids on the spectrum.

Some families don’t choose to do ABA, and I understand.  It can be daunting, and you have to do what is best for your family.  For us, we feel like Colin needs the structure, repetition, individualization, and consistency.  He also needs that one-to-one ratio right now.

You may have heard some controversial things said about ABA therapy:

ABA turns kids into little robots.

ABA kids are so therapatized and rote.  

ABA is mean and cruel.  

After hearing those things, you might be wondering, “Why would you put your kid in a therapy if it’s like that?”

So, why ABA?

First of all, we did our research.  We found an amazing ABA center.  I’m sure there are “bad ABA places,” so you have to find a good one.  I have watched videos of kids who went through this program.  They made amazing progress in just a few years.  Watching those videos gives me such hope (and makes me cry).  During his initial evaluation, I realized, “Wow, these people just get him.”  They had literally all of his favorite things ready for him:  straws, light up toys, spinny toys, balls, squishy things – all of the things.  They  also have an amazing sensory room.  We left saying, “They are already Colin Experts!”

ABA is science, really.  Research shows that ABA works….and who am I to argue with science?

Kids like Colin, they learn differently.  He also needs to be taught so many foundational learning skills, and ABA will provide that instruction.

To address the “mean and cruel” thoughts…..here’s the thing.   His BCBA’s want to help.  They are not “trying to be mean.”  They are trying to teach him.   They are trying to help him.  Does that sometimes mean that they will withhold something he really wants?  Yes.  Does that mean that he doesn’t always get his way?  Yes.  I would venture to say that this happens to every single one of us at some point in our lives.

Therapy can be hard for him.  He gets mad.  He cries.  It is work, and it is exhausting work.  It is also hard for Mommy to see him get upset in therapy…..

but you know what?  I watch my baby struggle every.single.day.  Every day tasks that are easy for other kids, they are hard for him.  He will be four years old in a month, and communication is still such a huge hurdle for him.  Following directions, sitting and waiting, reading social cues, following socially accepted protocols, being in large crowds, these are all difficult for him.

So if this therapy will help him learn new things, then we do it.  Will there be tears?  Yes.  Will it be hard and exhausting?  Yes.  Will he get mad and frustrated?  Certainly…but we will do it anyway.

Why, you ask?

Because I will do whatever it takes to help my son.  If he needs 40 hours of intense, direct, one-on-one (expensive) therapy every week, then that is what we do.  He is smart.  He can learn, but his learning style is different.  He needs things broken down into tiny steps.  He needs consistency.  He also needs lots of understanding.

I don’t know how long he will need ABA therapy.  Months?  Years?  That is one of those things that I can’t think about for too long, or I end up feeling stressed and worried.  For now, he’s getting ABA.

I am not trying to “fix him” or “cure him.”  As I’ve written before, he isn’t broken.  I don’t see ABA as a “cure all,” but I do hope that it helps him make progress.  I just want to help him.  I want to give him every opportunity to have his best life.  I want to help him learn new things.  I want to make his life easier in any way that I can.  I want him to realize all of his potential.  I don’t want to hold him back because we didn’t teach in a way that he could learn.  I am excited to see where ABA takes him!

I hope to look back at this post in a few years and say:

Wow.  Those were hard days.  It took a lot of time and effort (and prayers, and money, and tears, and driving, and coffee…), but it was all worth it.  Look how far he has come!  I know that we have done everything we can to help him.  Colin has been worth it.  

In honor Valentine’s Day (even though I completely acknowledge that Valentine’s Day is a made-up holiday), I wanted to do a💗 LOVE💗 post.

Random things I love:

• a good cup of coffee.  In all honestly, it doesn’t even have to be good.  I just love coffee.
• a kid-free Target trip.  Preferably with gift cards in hand!
• a clean, organized, nice-smelling house.  Nothing feels better than a clean house!
• binge-watching Netflix shows like Once Upon a Time and Parks and Rec.  Leslie Knope is my spirit animal.
• office supplies.  Pens, markers, and binders, oh my!
• a planner.  I’m not a “I’ll put it in my phone” kind of gal.  Paper planner: all day, er-y day.
• color-coding.  You better believe that my planner is color coded.  
• a good book.  (but it has to be a good-good book, or I won’t finish it!)
• a nice fall or spring day where we can be outside and not be cold.  or sweat.  I hate sweating.
• hand lettering.  Chalkboards, cards, whatever.  It’s relaxing.
• I loved to color before it was cool.  Ask my mom.  I wanted coloring books for Christmas 15 years ago. 
• food.  Any kind.  Just food.  I’ll take all of it. 

Do you know anyone who makes custom doormats?  We don’t have a doormat for several reasons. One, we would just get it dirty.  Why buy something that I know we will ruin?  Two, it’s windy here, and it might blow away.  Three, I think we would need a very specific doormat to properly prepare people to enter our home. It would need to read something like this:

When it comes to parenting, we all pick our battles.  We weigh our options and decide – is it worth?  Do I really want (or need) to fight this fight?

Now, I cut Colin’s hair when he takes a nap.  He rarely naps these days, so hair cuts are few and far between.  He gets a little shaggy from time to time, but that’s okay.  Mommy is no beautician, so they might not be the best haircuts either, but you know what?  It’s just hair.  

Curtis and I have attended some parent training courses offered by Colin’s (soon-to-be) ABA school.  One class was called “Haircuts, Dentists, and Doctors, Oh My.”  They gave us a 23-step process on how to help Colin get through a haircut.  In short, it involves breaking it down into tiny steps in order to desensitize him to it.  We bought the quietest electric clippers we could find.  The ABA school had recommended these: (picture is a clickable link)

If you know someone who struggles with haircuts, I highly recommend these products!  If I can make my son’s life easier, I will do whatever it takes!  Even if that means tricking him into a nap and crawling around like a ninja to trim his hair!

We will work on the desensitization for haircuts…someday.  For now, that’s just not a battle I am ready to fight.  Like I said earlier, it’s just hair.  

                        Colin at one year old and almost 4

Most babies say their first word around 12 months of age.  As I said in my last post, I worried about Finn talking.  When Colin was one, and Finn was two, neither of them had any words.  When Colin was 14 months old, he said, “bye.”  I remember my Pawpaw saying, “he’s going to talk before Finn does.”  I remember having anxiety about that.  What if Colin talked before Finn?  What would that do to Finn’s self esteem?

As any good SLP, I badgered Colin constantly to hear that sweet, sweet first word.  When people would leave our house, I could prompt him to wave and say “bye.”  He did pretty well for about a week.  Then he just lost interest and stopped saying it.  I really don’t think it was a matter of “he’s autistic and lost some language.”  He just kind of stopped, like he hadn’t quite mastered it to begin with.

As I’ve said, he does have some pop-out words, but nothing that he uses consistently.  If it isn’t used consistently with meaning, it doesn’t count.  (Sorry, kid, your mom is an SLP.  I’m a tough critic!).

Fast forward to today.  He is just over a month away from his fourth birthday.  I pick him up from his part-day of daycare.  One of his teachers says, “Are you leaving, Colin?”  I say, “Yeah, you better tell Katie bye.”  He usually just smiles and waves.

Today, he looks at Katie. Smiles. Waves….and says, “bye.”

*Insert all the excitement and all the heart eyes and all the thankfulness in the world*

He said it again to two more people before we left school.  I called my husband, parents, and grandparents on the way home to share Colin’s most wonderful news today!

We have a pretty set bed time routine.  Daddy brushes Colin’s teeth. Then Colin waves night-night to Daddy, because, well, let’s be honest: everyone wants Daddy to leave so Mommy can put them to bed.

Then this happened:

As a parent or therapist, we celebrate our children’s successes.  Every milestone, every improvement, every victory.  Your baby’s first hair cut, first steps – you probably documented it in their baby book.  Unless it is a second or third child….then they probably don’t even have a baby book!  (Hopefully they at least got a post on Facebook.)  My brand new nephew just rolled over for the first time this weekend.  It is super exciting to see our babies grow and learn new things.

I know you get excited if your neurotypical child says a new word.  Finn amazes me everyday with his ever-expanding vocabulary….but a new word for Colin isn’t “just another new word.”  That word carries with it so much hope and assurance.  Assurance in his ability to engage in an activity.   Assurance that he truly is listening to me babble all day about random things.  Assurance that he is learning new things every day.  Assurance that he is making connections with the words he hears.  Hope that more words are in his future.  Hope that, one day, he will walk in the kitchen and say, “Mom!  I love broccoli!” …..okay, that’s maybe a stretch.  Maybe, “Mom, no more broccoli!”  Yeah, that’s probably more likely. 

Today’s soapbox post comes from your friendly local speech language pathologist!  Here it is, the phrase that, when it hits my eardrums, gets my blood boiling:

“He doesn’t have to talk because you talk for him.”

Or it might sound something like this:

“He’s just lazy.”

“He talks when he wants to.”

“You get him everything he wants, so he doesn’t have to talk.”

AHHHH!  Just typing those out made my blood pressure skyrocket and my pulse elevate a good ten beats per minute. 

I hear this quite frequently about Colin, but really, I also hear it professionally about other children too.  Friends, here’s the thing though:  there is a big difference between “won’t” and “can’t.”

“Won’t” is a choice.  “Won’t” means “I can physically and cognitively do this, but I am making the willful decision not to do it.”

“Can’t,” according to Merriam-Webster, means “unable to do.”

Children who aren’t talking, for whatever reason, can’t talk.  Imagine yourself in Colin’s shoes:  you want a drink.  You take Mommy to the kitchen and show her that you want something in the fridge.  You open the door and she says, “What do you want?”  You point to the juice.  She says, “Juice.  Tell me juice.”  She asks you to repeat her several times.  You begin to squeal and point.  You just want a drink of juice!  You start to get frustrated because 1) you have already shown her what you want, and 2) the word just isn’t coming out!

Now, in that situation, wouldn’t you just say the word “juice” if you could?  If someone is withholding the thing you want, and allllll you have to do to get it, is name it, you would absolutely do that! 

If a child isn’t talking, I’m willing to bet it’s a “can’t” issue versus a “won’t” issue.  That is why I get so worked up when someone tells me that he “doesn’t have to talk, so he doesn’t.”  He gets frustrated when he wants something and I don’t know what he wants.  There are times that I am sure he would love to tell me “I am done with this, let’s go!” ….but he can’t.

I also have to chuckle when someone says, “well you do everything for him, so he doesn’t have to talk.”  You do realize that you’re talking an SLP, right?!  I am the mom who has put everything he wants (or might want) out of reach or inside a locked cabinet just so he has to come get me and show me what he wants.  Then, once he shows me, I model the heck out of that word in hopes that he will imitate me.  I am the queen of sabotaging his environment to create opportunities for language.  Yes, I usually anticipate his needs, but I still make him work for it!  He might be my first child with special needs, but this ain’t my first rodeo, so to speak!

I know he gets frustrated when he can’t communicate what he wants or needs.  I have to read his cues and know when it is time to stop pushing for verbal words.  Sometimes, words do come out.  I can see the excitement on his face after he says something and we praise him.  His little eyes light up, and he is so proud of himself…and we are always proud of him, words, or no words. 

People ask me how I handled Colin’s diagnosis, and here’s my answer: I think I handled it really well.

I’ve always known he was different, so I wasn’t shocked or blindsided by a diagnosis.  We ended up seeking out a diagnosis because we knew we would need it in order for him to get the services he needed (like ABA therapy).  I knew that the day we went in for “the appointment” that we would leave with an “official” autism diagnosis.

Not the answer you expected?…Then maybe this is: I still cried.  You see, even though I knew it deep down, it is hard to hear that your child will forever carry this diagnosis and is labeled “special needs.” It’s hard.  And it stinks.

The hardest part for me was feeling like I had failed him.  I took a leave of absence from my job this year so that I could be home with him.  I could work with him one-on-one and really target the areas that were most affected.  Maybe, just maybe, we could improve those areas enough that he would avoid a diagnosis.

So when I bit the bullet and scheduled the appointment for his psychological evaluation, in a way, I was admitting defeat.  I was admitting that I couldn’t fix him, I couldn’t fix those little things that all added up to “autism.”

Being a therapist, I had placed so much burden on myself to do just that: fix him.  I mean, what kind of therapist am I if I can’t help my own son? Even worse, what kind of mother does that make me if I can’t fix him?

As I write this, I see the error of my thought process.  He doesn’t need to be fixed, he just needs to be helped.  His brain may work differently, but he isn’t broken.  He will  (most likely) never learn the same way Finley does, but that doesn’t make Colin’s learning style insufficient in any way.  He may take longer to learn things, and that’s okay too.

We take each day as it comes.  We truck through the rough moments and celebrate his victories.  Some days I think about his future, and I worry what that will look like.  I just want him to be happy…isn’t that what we all want for our children?

This is why I started this blog.  I want to raise awareness and acceptance so that he can live in a world where he is understood, accepted, and happy. He is different, not less.

Autism might dictate his behavior, but it does not define his character.

What does that even mean?

Because Colin has autism, I can expect him to behave in certain ways.  He gets overwhelmed in stores and might cover his ears.  He sometimes screams.  Visually, he is drawn to certain things – he could watch flowing water indefinitely.  If someone asks him a question, he doesn’t verbally answer, and might not even acknowledge their presence at all.  He enjoys doing things like shaking tassels.  He likes to drop things just to watch them fall (like balloons or confetti).

I say autism dictates these behaviors because they are pretty typical of what you see in someone with autism.  If I saw a stranger doing these things, I would assume they have autism too.

BUT….these behaviors do not make him Colin.  Autism does not define his character.  You see, no two people with autism are alike!  My own grandmother has a hard time with this concept.  She once knew a person with autism, so she assumes everyone with autism should be like him. 

Colin is happy.  He is almost always smiling at home (now this isn’t always the case when we are out and about, but going out can be stressful and difficult for him).  Not to say that he is never frustrated or angry, he is human, afterall!

He is the best cuddler I know.  He is very affectionate, always giving hugs and kisses.  I call him my little love bug.  If we are on the couch, you can bet that he’s right there cuddling. 

He absolutely loves the Muppets.  He loves sticker books.  He loves his big brother and enjoys wrestling and cuddling with him.  He’s also a big fan of cars, balls, balloons, and bubbles.  He’s never met a trampoline he didn’t like.  He would live outside if he could.  He loves swimming, playing in the dirt, running and taking walks, and being with his 50+ chickens and ducks. 

He might have autism, but that isn’t who he is.  I think that is what I most want people to know.  He is still just a little boy with his own (very sweet) personality!