Category: autism

Categories
advocacy autism greatest showman parenting

A Million Dreams

Since taking on my fifth job – yes, fifth – I’ve been a little MIA on my blog.  I was a little busy, but also, didn’t really feel like I had much to write about either.  We have been doing the daily grind:  school, therapy, homework/housework, bed, repeat.  Nothing “big” happening really, so no blog posts. 

Colin has decided that he loves The Greatest Showman.  Between that and Ice Age, we aren’t watching much else right now.  Yes, I know, he has very diverse taste, right?  He is so mesmerized by the songs, we rewind and listen over and over to our favorite songs. (Do you really rewind a digital movie?  Or is that just what us old folks still say because we grew up on VHS?)  Anyway, this gave me a series idea:  blogging about autism using the soundtracks from The Greatest Showman.  This past summer I wrote about my take on This is Me and autism, so now I’ll do a post for each of the other songs.   First up:  A Million Dreams. 



A Million Dreams starts off with P.T. Barnum as a little boy, saying:

Through the dark, through the door
Through where no one’s been before
But it feels like home

Autism is like that.  We often feel like we are in the dark, going through something that no one else has ever experienced.  You just crossed over into the unknown.  What will “autism” mean for your family?  Will my child ever talk?  Will this get better?  Easier?  It’s like going through a hypothetical door when you get that official diagnosis.  You aren’t sure where it’s leading you, but it feels like home.  And do you know why it feels like home?  Because this is still your wonderful, perfect son or daughter.  Everything has changed…yet it hasn’t changed at all. 

The next stanza, the boy is saying that people might call him crazy, but that’s okay, because
We can live in a world that we design.

Also, totally relatable in the world of autism.  Our lives look strange to “outsiders.”  Unless you live it every day, you won’t understand it.  Our parenting is often judged and our children often misunderstood.  Sadly, you and your child will likely be called “crazy.”  Or “weird.”  Or “bad.”  You quickly learn, though, that it doesn’t matter what the world thinks.  You know what works for your family, and you live in a world that you design.
The chorus:

‘Cause every night I lie in bed
The brightest colors fill my head
A million dreams are keeping me awake
I think of what the world could be
A vision of the one I see
A million dreams is all it’s gonna take
A million dreams for the world we’re gonna make

This is where it really hits home for me.  As an autism mom, I really do lie awake at night.  Some nights, I’m worrying about something.  Other nights, I’m reliving a particularly big milestone that was met that day. Others, I’m plotting and planning and scheming, trying to figure out how to make my son’s life the best it can be. 

We have to be dreamers, but we must also be doers.  Just like P.T. Barnum and his circus, it’s gonna take a million dreams to bring about the vision I have for the world.  Not just a world of awareness, but one of acceptance.  A world of understanding…one of inclusion…one of love.  A million dreams,…and advocacy, education, outreach, storytelling, listening, and learning.  Blood, sweat and tears…and lobbying, and sharing our stories. 

If you’re a part of the autism community, you know what I mean.  We have to work and fight and work some more.  This world isn’t always accommodating or accepting of those who are different.  It is our job to change that.   Together, we can make a difference…because a million dreams is all it’s gonna take, for the world we’re gonna make.

Categories
ABA autism BCBA progress therapy

Thank You, ABA Team

To Colin’s ABA team:

First of all, Happy Thanksgiving!  I hope you all eat your weight in turkey and pie today – you deserve it. Have that second or third piece of pie, you know you’ve earned it!

I wanted to take a little time today to thank you all.  You’ve only been a part of our lives for about nine months, but you’ve made such an impact on our little family in that short period of time.

First, I have you all to thank for Colin’s amazing progress.  You are in the trenches with us every single day, working tirelessly to help him succeed.  You power through the rough times and celebrate with him in the good times.

I want you to know how much of an impact you’re making, because sometimes we forget in the day to day how far we’ve come.

You have taken a little boy who didn’t sit at the table, and you have taught him to sit for long stretches of time.  (Have you ever tried to bathe a cat?  Getting Colin to sit in a chair was a very similar experience about nine months ago.)

You have taken a little boy who only did things that were his idea, and you taught him complete adult-directed tasks.

You have taken a little boy who screamed out of frustration and you have given him a voice.

You have taken a little boy who thought “WAIT” was a bad four letter word, and you have taught him to patiently wait and ENJOY it like it’s a game.

You have taken a little boy who was so unsure of himself, and you’ve given him self-confidence.

You have taken a little boy who was just stuck, and you have taught him how to learn.

You have opened up a whole new world of opportunity to him and to our family.

Just as important as all of those things listed above, you have taken a little boy who could easily be overlooked, or left behind, or ignored, and you have accepted and loved him for who he is.  You see him, truly see him.  You see his sweet personality (and ornery streak), and you see his potential.

Today, I hope that you are proud of the jobs that you do, because they are ever so important to family’s like ours.  You have changed the trajectory of my son’s life – and that’s monumental.  You truly are life-changing ninjas – wear that badge with honor!  Your jobs are so important, and we are forever thankful for you all.

Categories
autism brothers

Playing Together

We went to Target today as a family of four.  This was Colin’s best Target run ever.  He sat in the buggy, or held our hands as he looked at stuff (and picked out a Branch Troll stuffed animal).  We also found a cool little bubble machine on sale.  Finley picked out an Imaginext toy.  They both got new bedding, so it was a win-win-win kind of day!

We got home, and they both started playing with the Imaginext toy.  Colin was putting the balls into their spots.  Finn was helping him.  It was so sweet.

This evening, we built a campfire and spent the evening just playing in our backyard.  The boys were rolling down the hill together, Finn was giving Colin piggy back rides.

We broke out the new bubble machine and they were both fascinated.  Finn wanted to go back to rolling down the hill, but Colin was engrossed with the bubble machine.

Finn kept calling his name, begging him to play.  I even tried walking him over to Finn, but he ran right back to the bubble machine.  Finn almost cried and said, “I just want to play with Colin.”

That breaks my heart every time it happens.  I try to say things like, “He will play when he’s ready,” or “give him a minute,” but really, I want Colin to play with Finn too.  Brothers are supposed to be built-in playmates.

After a while, Colin ran over and started to play with him again.  They rolled down the hill, laughing and having so much fun.  They played in the sand and on the pirate ship together too.  Finn came over to the fire once.  Colin came over, grabbed his hand, and pulled him back over to the hillside to play again.

Finn would say, “Get our picture, Mommy!”  So I took several pictures.  Colin will now say, “Cheese!” when we take pictures, so that’s cute too.

Colin sure does love his Bubby.

It seems so simple and common – two brothers playing together – but these moments are so special to all of us.  I know the boys will look back at these pictures someday and remember how much fun they had playing together.

You can see the love in Finn’s eyes.  I tear up looking at this, he’s such an amazing big brother. 
Categories
autism celebration family

Why I Will Celebrate My Son’s Autism Diagnosis

At the end of this month we have two important anniversaries:

1. our “dating” anniversary
2. Colin’s autism diagnosis anniversary
That first one is something most people would likely celebrate.  The second?  Maybe not.

Curtis and I started dating in 2001.  For those of you who are like me and are horrible at math, that’s 17 years of togetherness.  We don’t necessarily “celebrate” this day, but we at least acknowledge it.  This day was a really important day in history, well, our history at least, because that’s when “we” began.  “We” wouldn’t be here if not for this important milestone.

This will be the first year that we celebrate Colin’s “autism diagnosis day.”  Do people celebrate getting an autism diagnosis?  Acknowledge?  Commemorate?  Throw a party?  
….or ignore it and act like it never happened?
I for one, will be celebrating it. 
Why I Will Celebrate My Son’s Autism Diagnosis

Before we knew for sure that Colin had autism, the unknown was driving me crazy.

Now, you might be thinking, “Deidra, you were crazy anyway!”  Yes, that is probably true, but this made it worse!  I knew something was “wrong,” but what was it?  A whole slew of diagnoses fluttered around in my brain every day as I questioned why he was behind his same-aged peers:  developmental delay, cognitive impairment, sensory processing disorder, hearing loss, auditory processing disorder…my mind never stopped worrying about the “what if’s.”

The unknown was hard and scary and stressful.  When I didn’t have an answer, I questioned everything.  
Why is he doing this?
Why isn’t he doing that?
What do I need to do?
Will he ever get better?
Where will he be this time next year?
Will he ever learn new things?

What is wrong with my baby?!

Then, he got his autism diagnosis.  It was “official.”

We had an answer.  With that answer, we had an explanation.  He was different….because autism!

Once the unknown became known, my stress level drastically decreased.  We knew what it was.  We could move forward with our lives, albeit a different direction than I would have ever planned, but forward nevertheless.  Curtis always quotes G.I. Joe, and I think it’s relevant here:  knowing is half the battle!  

I will celebrate September 27th, the day of Colin’s autism diagnosis, because I will always celebrate Colin.  He is my wonderful, amazing, smart, beautiful boy.  We appreciate all of his great qualities – and autism just happens to be one of them!  It is part of the little boy that we all love to pieces.

I will celebrate because I am proud of him, diagnosis and all.

I will celebrate because (to quote my favorite Bearded Lady from The Greatest Showman) he is who he’s meant to be.

I will celebrate because I understand that there isn’t anything “wrong” or “broken” about him…he’s just different.

I will celebrate, because his autism diagnosis has brought some of the most amazing people into our lives.  Our little autism community is truly the best.

I will celebrate because God has taken my worst fear and turned it into my passion and testimony.

Also, I will celebrate, because celebrations involve cake.  I’m always up for cake.

Categories
autism book children's book

Coming Soon! Book #2

Sneak Peek!
After some frequent encouragement (please read that as “constant badgering”) from my husband, I wrote a children’s book!
This is a little sneak peek of the main character.  His name is Artie, and he has autism.  (I am sure that you would never have guessed that in a million years.  Me.  Writing something about autism.  Shocking!)  
How perfect is he though?!  With his AAC device and blue shirt for autism awareness.  
After some not-so-spectacular encounters with uninformed humans, my desire to educate and advocate hit an all-time high.  I always want to stop everything and teach/explain/lecture when people don’t understand autism.  I thought, “how can I reach more people?” 
Write a children’s book, that’s how! 
I started to think about Finley starting school, and how many of his new classmates might not understand autism.  Children are so impressionable and understanding.  Teaching them about autism at a young age will hopefully increase their awareness and acceptance.  My hope is that, with more exposure to autism, people will be more understanding.
Stay tuned!

Categories
autism parenting play siblings

Together

You might get tired of reading this phrase over and over, but it’s true:

with autism, the small things are really, really big things.

I wrote about this in my book, and it’s still something I struggle with often…I feel like I have two only children most of the time.  Finley wants to play make-believe.  Colin just isn’t there yet.  Colin wants to play with Finley, but it usually only happens when they are rough-housing, playing chase, etc.  So I feel like I need to entertain both of them all the time.  When they are on two different levels, that makes it hard, which stresses me out, which brings on the mom-guilt…you can see where this is going.

As they get older, they seem to be interacting more and more, which makes my heart so happy.  We were playing outside a couple of weeks ago.  They were rolling down the hill.  The next thing I know, they’re doing what Finn calls, “the double roll.”  They were holding tight to each other as they rolled down the hill as one mass of little boy.   They were laughing and having fun together.

Together.

That’s a cool word to use as an autism mom, because I know many children with siblings on the spectrum never experience anything together.  I am so grateful for the moments of togetherness that they get to share as brothers.

Then the chickens came over and bowed to Finn.  That’s what they do when they want to be held.  Finn was trying to put the chickens on Colin’s lap…Colin was pulling on Finn, wanting to “double roll” some more.

(A totally unrelated thought, but I never would have guessed that chickens would be such good pets.  There.  I admit it.  I was wrong once.  Just once, mind you.  About the chickens.  That’s the only time…)

Finley immediately turned into a little therapist, and he didn’t even know it.

He said, “Roll? You want to roll?  Tell Bubba ‘roll’.”  He is the most amazing big brother.  (Also know that they fight like cats and dogs over control of the TV…which leads me to my next point today…)

We have had some screen time issues as of late.  My child, who shall remain nameless (cough-cough-Finley-cough-cough) thinks he needs the phone, iPad, computer, TV, something with a screen, all the time.  It’s a problem that I caused.  Any time I needed to do something with Colin, I gave him his iPad.  Then it became “Oh, I can have this all the time,” to which mommy and daddy are fighting against as we speak.  Send up all the prayers and positive thoughts our way…we need them!

Anyway….

Today I just said, “no TV.”  It’s been off, and no one is fighting over what show is playing.  Colin doesn’t just sit and watch it, but he thinks it has to be on for the background noise I guess…but no background noise today.

I threatened to give away all of the toys…you know, since he doesn’t play with them and thinks they’re all boring.  He decided to go into the attic and bring down his Imaginext toys.  I look over and see this:

They’re playing together.  Now granted, it’s more parallel play on Colin’s part (definition: playing beside other children), but he is watching Finley.  He wants to be there with him, he wants to play.  He is playing appropriately with toys, which is also so big.

If you don’t have a child on the spectrum, I hope that you never take for granted that your children play together.  This might seem like an everyday thing for your family, but for ours, it’s a really really big thing.

Together. 💙💙

Categories
autism spartan

Spartan, Aroo!

My sons recently completed their first Spartan Kids race. 

At four and five years old, they were the youngest Spartans out there! 


They ran (and sometimes walked) the longer stretches of the course and completed the obstacles like champions.  Crawling through tunnels, splashing through the mud holes, and scaling the cargo net wall, they earned their medals like true Spartan Warriors.

I am extremely proud of both boys, especially my four year old.  He had to work just a little bit harder than the other kids out there, because he has autism.

He is an overcomer, my little Spartan.  He might have been one of the last to finish (because he kept slowing down to watch the adult waves run by!), but he finished the race.  He was able to do everything that other kids did…he just needed a little extra help and encouragement to do it. 

Big brother finished the race first.  After enjoying his complimentary banana, he ran back through the course to help his brother finish too.  I was so proud of him, wanting to help his little brother finish and earn his medal.

Big Brother, proud of his medal

I was also thankful for the Spartan volunteers.  They encouraged my son throughout the obstacle course, and they cheered him on when he was successful.  I hope his life is full of similar experiences:  where people encourage him when he struggles, acknowledge his dedication and hard work, and praise his successes. 




This race wasn’t about winning or even finishing within a certain time frame.  It was about finishing the race and having fun.  It was about trying something new and gaining the experience.  I think we accomplished those goals. 

After the race, he just kept smiling and admiring his medal.  He was so proud of it and of himself.  

So Proud


“Earned…not given.”  


I’m sure that he will have to work a lot harder in this life, but I also know that he is up for the challenge.  (And we will be right beside you every step of the way, Spartan!)  

Aroo!

Categories
advice autism awareness

SoapBox: They Probably Understand…

*Soapbox Warning*

Just something that I thought I would put out there, for your future reference.  You know, because I like to make sure you are being your best self, and this will help you with that….also, because this particular thing bugs the snot outta me!

My advice to you is this:

When you are working with anyone who is nonverbal, never assume that they don’t understand you.

Let’s just imagine this for a minute:

You can’t talk.  You have thoughts, opinions, things you might want to share with others, but you can’t, because you are nonverbal.

Your ears work just fine, so you can physically hear what is going on around you.

Your receptive language (what you understand) is also fine.

Now, imagine that someone is talking about you in front of you.

What would that feel like?  Would you appreciate that?  What about if someone spoke for you?  Would you want someone to assume you don’t want to answer for yourself?  (Because you might not be able to talk, but you can “answer” in other ways, of course!)

I thought this might be a good reminder as school starts back, and many of you might be working with kids who are nonverbal.  Just because someone doesn’t talk, doesn’t mean they don’t understand.  People who are nonverbal are smart too!  Just remember that.

Always, always, always assume that people understand you.  It’s just the considerate thing to do. 🙂

Categories
ABA autism therapy

I Love ABA

I love ABA.

There, I said it.

Really, if ABA were a person, I’d be talking Curtis into the whole “sister-wife” thing…that maybe just got a little weird, but really.  I’d marry ABA.

In just six months, ABA has changed Colin’s life.  It has taught him how to learn.  When you teach a kid how to learn, you open up the world to them.

I am so proud of his new skills:  sitting and working, waiting, matching, sorting, imitating, attending to task, using his AAC device, gaining verbal words….the list goes on and on.  Seeing how much progress he has made in six months (with just two hours of therapy a day) is unbelievable.

But do you know what else ABA has given Colin?

Confidence.

I watched him today while we attended a birthday party for some friends.  Their house was full of people that he (mostly) didn’t know.  He sat at the table as we sang “Happy Birthday.”  He watched them open their gifts.  He played with their new toys.  He interacted with other adults.  He was happy.  We stayed for two hours – this would never have been possible before ABA.

With ABA therapy, he has learned that he can try new things.  He used to enter a new situation and immediately try to flee.  Meltdowns happened almost immediately.  When he didn’t know what was expected of him, or didn’t know what to do, he wanted out of there.  When he did come around to trying something new or hard, he wanted to be alone.  When he first became interested in puzzles, he only tried them when he was alone.  If I approached him, he immediately stopped.  It was almost like he was uncomfortable in his own skin and was afraid to even try.

Today, I watched him.  He sat.  He observed.  He saw what everyone else was doing, and he joined in and did it too.  He was comfortable and happy.

He wanted to play with their new NERF gun.  He took it to another adult.  He tried to load the dart, but couldn’t figure it out.  The adult helped  him do it the first time.  The second time, Colin was able to do it himself.  He had the confidence in himself to try something new.  He never did that before ABA.

As my Mawmaw would say, you can see the wheels turning.  He is watching and learning.  This is such an important skill, and we have his amazing ABA therapists to thank for that.

This time last year, I worried about him so much.  Would he ever talk?  Would he ever follow directions? Would he ever progress beyond where he was?   Could he learn new things?

Now, I still worry about him.  I wonder if he will ever have functional speech.  But now, I know that he will continue to make progress.  He is learning new things everyday.  He has developed a self-confidence that gives him the ability to try new things.  ABA therapy isn’t just teaching him how to “do this” or “do that,” it is teaching him how to learn and giving him confidence in his ability to learn along the way.  Seeing how confident he has become in learning makes my heart happy.

(And, Hey, ABA – if you’re out there and reading this, the sister-wife offer still stands.  Full disclosure here: you’re on laundry duty.  It’s my least favorite chore.  I hope that’s not a deal breaker.)