Month: July 2018

I have always wanted to just “fix” all of my son’s problems. Fix his receptive language.  Fix his expressive language. Fix his social communication.  Just fix it all!  I worked and worked and worked, doing all that I knew to do…but nothing “fixed” him.  

Have you ever felt that way?  Like no matter how hard you try, you just aren’t enough?  

If the answer is “yes,” then please keep reading.

I completely, totally, 100% understand where you are coming from, Friend!  You love your child and want nothing more than to help them overcome their communication hurdles and obstacles.  

I have two secrets for you, and I hope that they give you some peace of mind:

1) your child doesn’t need to be fixed, and 

2) you are enough! 

Your child does not need to be fixed, because they are not broken!!  Realizing this little fact was HUGE for me.  The therapist in me saw all of the things that weren’t age appropriate. That therapist wanted to fix them.  Changing my mindset from “fixing” to “helping” made all the difference for me.  

To me, “fixing” means that the problem disappears.  “Fixing” meant that I had achieved my end result and everything was complete.  “Fixed” meant no more need for therapy, no more help needed, none of that stuff.

“Helping” means  making any positive changes towards his goals.  That, now that is doable!!  Any kind of progress made means that I have helped him.  “Helping” is an ongoing process and every little bit matters.

My son isn’t broken, but he does need more help. It is my job to get him the help that needs.  That leads me to point number two:

You are enough!

I am the type of person who wants to do everything myself.  I am a control freak, for sure.  I want to do things myself and Iwant to be the best at everything.  

I had the same feelings about my son.  I tried to be his everything:  Mom, therapist, his voice, advocate, scheduler of all the things, life coordinator, chef, taxi service- everything.  It took me a few years, but I realized that I couldn’t be and do everything myself.

I called in other professionals to help him.  He goes to private speech therapy (not provided by mom!) And he goes to ABA therapy everyday.  I needed other people to help me help him!

First and foremost, you are mom.  That is the most important job. It is your job to find help for your child.  So you can’t do it all yourself?


That’s okay- that is why the professionals are here to help!! 

You’re doing great- keep up the good work!

I had a dream the other night about Curtis and me.  It was the high school version of us.  Just two young-and-in-love band geeks.  That dream got me going through old scrapbooks and reminiscing.

I look at these two pictures, taken almost exactly 3 years apart.  From 2002 to 2018.  From 16 to 32.  So much has happened in those 16 years.  That first picture was taken a lifetime ago…or was it just yesterday?

That 16 year old girl knew she would marry that 18 year old boy. Never questioned it, because I just knew. We have been “Curtis and Deidra,” a single unit, for over half of my life now.

Do you ever look back and realize just how different your life turned out to be?  I had so many plans. Big plans, small plans, but all “planned.”

First off, I always thought I wanted to live in a subdivision with lots of neighbors.  Then we went to college and actually had neighbors!  Yeah, learned real quick that we didn’t care for having neighbors!  Now we live on a farm with no visible neighbors.  I always swore I’d never live on a farm…

I most certainly didn’t plan to struggle with infertility, yet that experience gave us the most precious son.

In my head, we would have three kids.  Two girls and a boy.  We ended up with two perfect boys, and three babies we will meet in Heaven someday.

I thought I’d be the super cool, super skinny Pinterest mom (okay, Pinterest wasn’t a thing back then, but that’s the kind of mom I wanted to be!)…and here I am, still a geek at heart, carrying around “baby weight” four years after delivery,  and never doing ridiculous crafts with my kids.  (I know…the shame I bring upon my family, right?!)

I thought I’d be a soccer mom, PTO mom, all of those things that moms do.  I might still be that mom someday, but for now, I’m a therapy mom.

I never planned to have a child with special needs, but I am so thankful that God saw fit to give Colin to us.

While our life together is completely “off” from what I planned, it is kind of exactly what I wanted too.  We are together.  We have two beautiful children.  We have good jobs working in the fields that had chosen to pursue all those years ago.  We sit outside at night by the campfire while the boys play and eat marshmallows.  Life is pretty good.

If I could go back and talk to those two kids in that top picture, what would I say?

Well, I would to hate ruin all the surprises, but I’d  probably tell them that everything will okay.  They will build a good life together.

Don’t focus so much on your plan and how things “should” go, but rather enjoy the here and now.  As I am learning, most of the things we worry about and plan for, well, they aren’t that important or even necessary.   I have wasted so much time and energy on such insignificant things over the years.  At 16 i thought I had our whole lives planned out.  At 32, I can barely plan for next week!  Just give up some of that control, Girlfriend – it’ll save you lots of stress and worry when God throws a wrench in your plans!  He’s got it all figured out way better than you could ever plan anyway!

Don’t compare your journey to everyone else’s.  You two are special, afterall (which they’ll agree, of course), so your life together will be special and different.  Live your life and let others live theirs.  Being a little different is all part of being who you’re meant to be.

I’d probably also tell myself to eat that extra cheeseburger while I still can, (16 year old Deidra wasn’t fat like she thought she was!) because once you hit 30, every carb counts…and everything you eat will give you heartburn.  

We had a yard sale the other day, and I had the privilege of meeting a fellow autism parent. 

This gentleman’s son is 17.  We talked for nearly half an hour as he shared their story.  They had done it all, and he definitely knew his stuff:  ABA, allergy testing, special diets, special doctors, hyperbaric chambers, lupron injections, speech therapy, social stories, difficult outings, etc.  He was well versed in all of the different treatments associated with autism.  (I always know that I’ve met “the real deal” when they drop Dr. Lovaas’ name!)

He shared a story with me.  His son had an SLP in the schools.  The family had not been happy with this therapist’s goals, so they called a meeting.  The SLP said, “Your son’s language is robotic.”  The dad smiled, laughed, and said, “Lady!  He HAS LANGUAGE!”  

I completely understood his sentiment.  So what if his language was “robotic” – at least he had some language!  As autism parents, we shared that understanding.  What someone else might see has “problematic,” we see as a positive. 

This time two years ago, I questioned Colin’s receptive language skills.  Did he have any at all?  Did he understand what we said to him?  He didn’t follow directions at two years old, so I had a hard time with that.  After his initial OT evaluation, she pointed out that his processing time was delayed by several minutes.  Some might have looked at that and said, “Oh, no!  It takes him five minutes to complete a direction!”  I looked at it and said, “Yes! He HAS LANGUAGE!!”  Today, I know that he does understand what we say to him, and I am so thankful that he has receptive language.  Not only that, his expressive language is growing all the time. 

I shared with him a little of our journey, our daily trips to ABA therapy, special diets, special doctors, speech therapy, difficult outings.  He said, “Based on what you’ve told me, I think your son’s outlook is going to be great.  You’ve started early, and you have so much at your fingertips that we just didn’t have 15 years ago.  He will be okay and blow you away with his progress.”

I teared up.

Now, I know that this man wasn’t a prophet.  He didn’t really know how Colin will do in the future.  It was just nice to hear some encouraging words from a fellow autism parent.  Hearing from someone who has been there, that we can and are doing what Colin needs…that was just nice.  I also believe that God sends people like this into our lives to give us that little bit of encouragement and hope just when we need it.

That is what I want to be for someone else.  A sharer, an encourager.  I hope that this blog, Colin’s story, and our family’s journey, will one day speak to someone else.  If you’re reading this as an autism parent:  you’ve got this.  You’re doing a good job!

Before this man left, he handed my mom $10 and said, “I want you to go buy that boy something that he likes.”  I just thought that was such a nice gesture!  There are great people out there, Folks.

This is a church gym…but not just any church gym. 

Dear Sweet Boy,

Right now, you are taking a nap after a busy day.  You worked your little bum off at ABA therapy today, and you did amazing.  You worked on a fluency program and completed 8 tasks in 15 seconds!

I’m so proud of you!

Then I got home and checked Facebook.  A friend had tagged me in a video.  It was a boy with autism, and he was dancing to the song “This is Me” from The Greatest Showman. 

Mommy had herself an ugly cry.  Really, it was not pretty.  At all.

Then I looked up the song on Youtube and listened to it on repeat.  (Yes. I know, I was shocked too…Youtube does have more than just Sesame Street and Mickey Mouse….I know!!)

I had myself some more of that ugly cry.

This song talks about the world, and how it can make you feel less than. 

Not good enough. 

Unworthy. 

We are often made to feel like we should be ashamed of who we are, and we need to hide ourselves away.  I know I’ve felt that way many times.  Our differences are often picked apart instead of being celebrated

..and I worry about you, my Col-butt, because your autism makes you different.  You don’t fit “the mold,” so to speak.

I worry about how the world sees you.

I worry about how they will treat you.

Most of all, I worry about how the world might make you feel about yourself.

But that song….

While it makes me cry, it also makes me smile.

Because you are worthy.

You are amazing. You’re smart and you’re funny.  You are beautiful…and a little bit rotten.

You might be different, but that is what makes you special.

I hope and pray that you always know how great you are and how loved you are.  Never let anyone make you feel bad about who you are.

Starting today, I, as your Mommy, will stop making excuses.  I will stop explaining away your behaviors with an “oh, he’s autistic.”

Because Colin, you don’t need to make any apologies for who you are.  Just keep marching to your own beat, because this is who you’re meant to be.

…now I really need to watch this movie.

You know, because Hugh Jackman.

News flash:

I am an easily offended person.

Those people have always gotten on my nerves…yet here I am, joining the ranks of the easily offendable.

Allow me to explain.

I don’t care about your sexual orientation.

I don’t care who you voted for.

I couldn’t care less about keeping up with the Kardashains or what they name their children.

I’m not bothered by the color hair the teenagers have these days. 

You can breastfeed in public, no offense taken.

You can bottle feed your baby – fed is best, I always say.

You can choose to vaccinate or not to vaccinate- that is the question these days.

You can have one, two, three, four, heck, you can have five kids if you want to – they ain’t keepin’ me up at night!

I bet you’re thinking, “Wow, Deidra.  I thought you were easily offended, what is it that raises your blood pressure these days?”

Here it is. What you’ve been waiting for…..

I’m easily offended when people are not nice.

Im bothered when they lack an ounce of compassion for their fellow man.

I really dislike when they don’t hesitate to judge what they can’t possibly understand. 

While I say I’m offended, I’m really more hurt than anything.

I’m hurt when people judge my parenting choices when they don’t know me, my kids, or our situation.

I’m hurt when I see people bullying others. Especially when said people have no idea what the other person is going through.

So here is my unsolicited advice for today:

Don’t judge what you don’t know.  (If you can’t do that, at least keep your thoughts to yourself!)

Show compassion.  (Any random act of kindness will do!)

Be kind. (All it takes is a little smile to brighten someone’s day.)

Remember the last post where I talked about “finding the happy?”

Yeah, that mushy feeling is gone.  There is no happy in this post.

Brace yourselves, this is a long one.

So we are vacation.  My mom, mother-in-law, the boys and I come to Williamsburg, VA for a little getaway.  We swim, go to the beach, outlet shop, and eat ice cream, because vacation.

We went down to Colonial Williamsburg this evening.  It’s late, the boys are tired.  We went into the candy shop.  Colin picked out what he wanted, then wanted it right now.  So Nana took him outside for a walk.  We made the rest of our purchases and headed out to meet them.

Nana wanted to get some postcards to send to her Sunday School class.  I directed her towards the William & Mary bookstore.  Grandma took Finley up to the children’s section on the second floor.  Colin and I stayed outside for a bit, then we headed inside.

He saw the escalator.

Escalators are entertaining for him.  We were riding up, then down, up , then back down again.  He was having a good ol’ time.

See:  Exhibit A:

I tried to direct him to the toys and books once, but he wasn’t having that, so back to the escalator we went.  I wanted Finn to be able to look for a while, so I was keeping Colin entertained.

After several minutes I heard someone calling, “Ma’am.  Ma’am!”

I ignored it twice.  For starters, I don’t feel like I’ve reached the “ma’am” stage of life just yet.  I’m 32.  She couldn’t have been talking to me.  Besides, we had been there a while, surely it was another “ma’am” (of a much older age than Yours Truly).

The third “Ma’am” felt pointedly directed at me.  I turned toward the irritated voice, and what do I see?  What felt like 30 people, just staring at us.  Looking at me and my son like we were alien beings.

“Ma’am, we can’t have you playing on the escalators, it really isn’t safe.”

“He is autistic, I can’t just make him stop.”

“Yes, you can….(inaudible words now, because my rage was raging)…

I got to the top of the escalator, told Grandma and Finn that we were leaving.  I scooped up a screaming, rigid Colin in my arms and headed out the door.  I just wanted out of there.  (When I got back to our room, I called my husband.  He said, “What you should have done was pick up a $1 bookmark and go stand in line.”  HA!  That would have really shown them, right?!)

As we exited the bookstore, a foreign man and his teenage son were talking about us.  My Mom saw the teenager make a motion as he spoke, like, “he needed a spanking.”  She approached them and explained that Colin has special needs, and he cannot help acting this way.  The man just kept saying, “He didn’t mean that I was going to hit your boy, he meant that I would have hit him if he did that.”  She reiterated that Colin cannot be punished for this particular behavior in this situation because he cannot help it.  The language barrier was too much here, I believe, because he never seemed to “get it.”

We made our way back to the car.  Colin was very upset.

Was he upset because he was so abruptly stopped while he was just having fun?

Or did he understand what had just happened?

Or could he feel my energy?

Maybe all of the above….

We got back to the vehicle.  I was livid.  I was hurt.  I was upset.  Momma Bear was out, and I couldn’t cage her.  I said, “I’m going back in there.”

I was so hurt because she kept at it.  She warned me.  I explained that he had autism.  I was basically saying, “Thanks, but I got this.”  She could have stopped there.  She had done her duty in warning me about this very dangerous escalator.  If we got hurt, that would have been on me.  No, she kept talking. I felt like I was being belittled, judged as a parent.  In my mind, she was judging my child.

I walked my shaking self back into that bookstore, knowing full well that my voice would crack as soon as I opened my mouth.  The tears would fall immediately, but what I had to say needed to be said.

The store had emptied, and the woman working at the register was now alone.  I stepped up to her and said, “I just want you to know that, if that happens again, please talk to the parent personally.  That was so hurtful to turn around and see 30 people staring at us like that.  We get a lot of negative attention, and I was trying to avoid that by letting him ride the escalator.”

She explained that she was not allowed to leave her register to speak to people on the escalator.  She said that they often have people getting hurt on the escalator, and that someone just had to fix it yesterday because of people putting their hands on it.  He (Colin) was going to get hurt.  She was sorry, she didn’t mean to hurt my feelings, but she was just doing as her manager instructed.

I went on to say, “I am not saying that you don’t have people getting hurt, but he was not going to get hurt.  I was right there with him, helping him get on and off.  I wouldn’t let him get hurt for anything.  I had tried to direct him to the toys, but he was not interested.  His brother was upstairs looking at books.  I was trying to keep him quiet.”

I know my son.  I know that he will get upset, scream, cause a big scene.  These behaviors often distract other patrons.  I don’t like when that happens.  I used to care about the “comfort” of the other people.  As he ages, and I grow as a special needs parent, I care more about him.

I do what I can to avoid negative attention on my son.  

Colin calmed down by the time we made it back to our room, but he seemed….deflated.  He soon just went to sleep.

Tonight broke my heart.  Colin “just looks like a normal little boy,” I hear that a lot.  Because of this, people judge him so harshly.  They think he is just being a bad boy.  That I am being a bad mom.

I don’t really know what my purpose is in sharing this story…well, no, that’s a lie.  I do know why I am sharing this.

 I want everyone to understand how hard it is sometimes.  

He is just a little boy who finds joy in things that aren’t “typical.”  This is okay in our own little world, but we have to leave the safety of home sometimes and enter the neurotypical world.  We have to be around people who don’t know him, and people who don’t understand autism.

He has every right to be out, enjoying the world in his own way.  And I mean, how sweet is it that he can find joy in such simple things like riding an escalator?

I also want to apologize to every other special needs parent out there.  I used to look at you and ask myself, ‘Why are they so over the top?  Why are they ready to pounce at anything?  Why are they so ready to fight?  Why are they defensive?

I know now: because we have to be.

We have to stand up for our babies.

We have to fight for our kids.

We have to advocate for them when they can’t do it for themselves.

We have to educate, because the general population just. doesn’t. get. it.

Maybe I am silly for thinking that my little blog will make a difference…but I hope that it does.  I hope that, by sharing our story, Colin’s story, that I can help bring more acceptance and understanding.  All I want is a little more compassion for those who are different from you.  No one likes negative attention, and my precious children definitely don’t deserve it.

People with autism might be different, but they are not an ounce less than anyone else.

And heads up, apparently escalators are super dangerous, and we all need to be hyper vigilant and extra careful whilst riding them…you have been warned.

My mom said something to me that I often think to myself:

“I wish Colin would play with Finn.  It makes me sad for Finn because I know he would love it if Colin played with him.  It makes me sad for Colin, too.”

I think this all the time. I’ve written about it before, but the thought is always there, so I’m writing about it again.

I have two sons.  They are a year apart…built-in playmate, right?

Nope.  Not for my boys.

They might wrestle or rough-house with each other.  They will hug, kiss, and cuddle each other as much as two wild little boys will do…but to play together?  This just doesn’t happen.

Colin might play next to his brother, but never really with his brother.

I don’t know that you can truly grasp the sadness in that statement unless you see it in your own children.

To have a brother, but not a playmate.

To have a brother, but not a friend.

To have a brother, but feel like an only child.

Don’t get me wrong, my sons love each other.  They have a very special bond that only brothers can share.  Colin looks up to Finley, and Finley looks out for Colin.  Finn will even tell people that Colin is his best friend.  Colin will gravitate to Finley in a group setting every single time.

After my mom said that, I felt sad for a minute, as I always do when I think about it.  Then I found the Happy in the situation:

At least Finley has a brother.  We thought we would never have any kids.  Then we had Finley after a year of fertility treatments.  The likelihood that he would be an only child was very high.  Then God surprised us with Colin.  Their relationship might not be the “typical” brother-brother relationship, but it’s theirs.  

I love that they love each other…I just wish they could play together.  I hope that, one day, they will.