Month: September 2018

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Atypical…I’m Not Crying, You’re Crying

Do you get emotionally invested in the lives of fictional characters?

Because I do.

Reading books, watching TV shows, I get super attached to these fake people.  On evenings when we get to watch tv, I usually shed a few tears.  I have mourned the death of so many fictional characters that I’ve lost track of how many made-up people I’ve cried over.

We have been watching the Netflix series “Atypical,” and last night, it got me.

Atypical is about a teenage boy who has autism.  I loved it right from episode one when the main character reminded me of one of my all-time favorite clients.  (I know I shouldn’t have favorites, but….sorry.)  I also love that an autism story is being told on a show like this, so people can get a sense of what it’s like.

I feel like this show does a great job of showing sensory overload, language and social difficulties, and family struggles that come along when your child is diagnosed with autism.

I have been watching these two seasons and totally relating to so many of the situations.  I told Curtis a few nights ago, “I hope that Colin has a friend like Zahid someday.”  (Zahid is Sam’s best friend on the show, and he helps him out, looks out for him, and just genuinely appreciates Sam as a person.)

Without giving away any spoilers, I wanted to share this particular scene that got the tears flowing.

Sam is 18, getting ready to graduate.  He and his Mom have this conversation:
————————————-
[Mom]You know When you were five I made a list.
[Dad]You got your love of lists from your mom. She loves a list.
[Mom][CHUCKLES] I do. Anyway, I made a list of everything I hoped for, for you. I was trying to manage my expectations. Here.
[UNFOLDING PAPER] “I hope he makes a friend. I hope he can communicate clearly. I hope he can leave the house on his own. I hope he does okay in school. I hope he finds something he loves to do.
[Sam]” – Those are so easy.
[Mom]- No. They weren’t. They were hard. But every time I thought you couldn’t do something, you did it. You’re strong and determined.
And I’m so sorry I underestimated you about college. You can do anything.
—————————————-



Ahh, People!!  That just got all my feelings going.

I don’t know who wrote this scene, but they must have read my mind.  Those are the exact things that I hope for, for Colin.

I hope Colin makes a friend.
I hope Colin can communicate clearly.
I hope Colin can leave the house on his own.
I hope Colin does okay in school.
I hope Colin finds something he loves to do. 

Deep down, I think we all want those things for our children.  We want them to be happy.  We want them to express themselves.  We want them to be independent.  We want them to be successful.  We want them to do something that they love.

When your child has autism, you find yourself questioning, “Will he ever do this?  Can he do that?  Will he ever get there?”  When those questions and concerns for the future pop up, it’s hard.  Unknowns are scary.

This mom said that she was keeping her expectations in check.  I totally, 100%, completely understand that.  You want to have hopes, but you want to be realistic at the same time.

I also loved that Sam said, “Those are so easy.”  His mom then explains that they were hard for him at one point, but every time she thought he couldn’t do something, he did it.  Colin is only four, and I’ve had this happen so many times:

I just wanted him to sit at the table and work.
-He does it now.

I just wanted him to have three words.
-He has several verbal words, uses his AAC device, and tries to imitate most words that we model for him.

I just wanted him to go to a restaurant, sit at the table, and eat.
-He did that this past weekend.

I just wanted him to sleep through the night.
-Hallelujah, Praise Jesus!  He sleeps now.

I really, really loved this moment on Atypical.  It absolutely resonated with me as an autism mom.  Tears were shed.  I looked at that family on the TV screen, and I saw my family.  A mom, dad, and sibling supporting their boy on this autism journey.

Those things that are hard today – I have hope that they’ll be easy in the future.

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A Giant Step for Our Family

We went out to eat at a restaurant today.

We ate inside the restaurant, not in our car in the parking lot.

Big win.

The boys, my parents, and Mawmaw went to a local buffet restaurant today.  We asked to be seated in a quieter section of the restaurant, and I really think it helped to have fewer distractions.

We sat there for thirty, maybe even forty-five minutes.  Colin never got up out of his seat once!  He just sat and ate.  Eating has been a struggle lately, so this was a big feat in and of itself.

The boys had a good time, and I even had a good time.  That hasn’t happened in a restaurant for me in years.  I get so stressed and worried that I cannot let myself enjoy it.  But Colin has been doing so well lately, I was able to relax today.  And just look at these smiles:

Things are getting better.  This time last year, I wondered if they would.  I wondered where we would be now.  In the past, we have stayed home and avoided places like this because it was just too hard – impossible, really.  And here we are now, eating our weight in watermelon (Finn), strawberries  (Colin), and broccoli cheddar soup (me) in a restaurant in public.

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To the Mom Whose Child is Different

This post is for the mom out there who is realizing that her child is different. 

Maybe your baby is different from other kids his or her age.
Maybe they’re different from what you expected them to be.  
Guess what?
It’s okay.  
You’re going to be okay.  Your child is going to be okay. 
I think it is important to remember that.  You might have some uncertain days ahead.  Days might turn into weeks, and those weeks could turn into months.  You could possibly have years of this ahead of you.
But it will be fine.  I promise.
Do you know how I can make a promise like that to you?
Because I’ve been in your shoes.  I saw the differences in my son.  I worried.  I fretted.  I still worry, and I still fret…but I know it’s all going to be okay.
“How do you know that?!”  You ask?
Because I love him.  I love him for everything that he is, and everything that he will ever be.  
Now, that doesn’t mean that everything is easy.  We still have hard moments, so I cannot promise that things will be smooth-sailing from here on out.  
There will be trials.  Things will happen that you don’t understand.  You might not have an answer for it, and you aren’t sure what you need to do next.  
That’s okay.
There will moments of sadness.  You will mourn the things your child can’t do.  You will wish more than anything that life could be easier for them.  There will be moments where you wonder “what if?”  Sometimes you’ll look at other kids and think, “Why my kid?”  You will have days where you cry.  
That’s okay.
There will be worries.  There will be uncertainties and unknowns.  You won’t always have the answer, and that’s hard.  Really, really, hard.
That’s okay.
 There will be judgement from others.  There will be stares from strangers.  You might not have the support of those closest to you.  There will be days where you question yourself.  There will be times when you question every decision that you’re trying to make.
That’s okay.
But this is your child whom you love more than anything.  Nothing – not even a diagnosis – will change that.  
 Love your child, support them, be their biggest cheerleader.  I don’t look at my son and see his diagnosis.  I look at him and see his sweet personality.  I see his sense of humor, his love of music, and his rotten streak.  
Your child’s life might look different than you would have expected.  Yours, in turn, looks different too.  Take your unique life, and run with it. 
It’s gonna be okay. 

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Motivation

I love writing.

I would say that writing is a passion of mine. I love sharing our story here, and I would write for a living if I could make a living doing it!
People have asked me what motivates me to write posts, and that’s it.  I just love doing it.  I love to educate others about autism.  I think God gave me this, and I am meant to do something with it.  I also love hearing from other moms who are going through the same things and having the same thoughts/emotions.  This blog has connected me to several amazing people that I would not have met otherwise.  
I started some social media accounts to go with my blog…but I didn’t love doing that.  I didn’t love it, because I was doing it for the wrong reasons.  I had created this internal competition between myself and other SLPs/autism moms.  Were my posts as good as theirs?  Did they get more “likes” than me?
So I delete those accounts. 
I was never going to measure up to those perfect IG accounts with their beautiful photos taken with a professional camera and edited with special apps. 
I was not going to have viral Facebook posts that got me thousands of followers overnight.  
When I started this blog, it was only for myself.  After encouragement from close friends, I made it public.  I find joy in writing, so I will keep doing it.  Here, I don’t feel pressure to be better than anyone else.  I don’t feel less-than because I don’t have thousands of followers.  Here, I just do what I do best:  write.  No competition.  No worries. 
Writing helps me process of all the feelings and emotions that go along with this roller coaster ride called autism.  I hopefully reach other parents who need to hear what I have to say.  I hope the general public, those who don’t live this autism life, can learn something from my stories. 
“Comparison is the thief of joy.”  Theodore Roosevelt

I think knowing our motivation is important.  Why are you doing whatever it is that you do?  Are you doing it to help yourself or others?  Or are you doing it for the “like?”  Are you doing it because you love it?  Or are you doing it because you feel like you it’s something you “should” do?

Story telling is a passion of mine, and I hope that shows through my writings.  For that reason, I’ll keep sharing here on my blog, but won’t be keeping up any social media accounts to go with it.  

Here, I am motivated by son.  I want to educate the world about autism, one story at a time.  I hope to encourage other families to share their stories, to raise awareness and increase acceptance.  
What motivates you?
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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. 
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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.

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Doing What We Do

I’ve had to opportunity to share Colin’s story with several new people recently.  I’ve noticed a pattern in how the conversation goes.  Each time I explain that he goes to a “special school” or “intensive ABA therapy,” I almost always get several questions:

1.  What is that?
2.  Do you see improvements? 
3.  Is it worth it?

Yes and yes!

What is ABA?

It is kind of mind-boggling to me that people don’t know what ABA is, but I guess they’ve never had  reason to, so I get it.  I explain to them that he isn’t really going to “school,” but rather “intensive one-on-one therapy.”  We just call it school because he goes every day, he’s learning all the time, and to him, it’s “school.”

Here’s what Autism Speaks says about it:

Behavior analysis is a scientifically validated approach to understanding behavior and how it is affected by the environment. In this context, “behavior” refers to actions and skills. “Environment” includes any influence – physical or social – that might change or be changed by one’s behavior.
On a practical level, the principles and methods of behavior analysis have helped many different kinds of learners acquire many different skills – from healthier lifestyles to the mastery of a new language. Since the 1960s, therapists have been applying behavior analysis to help children with autism and related developmental disorders.

Do we see improvements?

YES, absolutely! 

He can do so many things that he couldn’t do before.  He’s learning new life skills like waiting, sitting and working, daily life tasks like washing his hands, etc.  He’s also learning “school-related” things like matching, identifying pictures, following directions, etc.   He’s learned to imitate, which has drastically improved his communication.  He’s always learning new and exciting things, so I think “improvement” is an understatement!

Is it worth it?

Absolutely!  Getting Colin the help that he needs is priceless. 

At least five different people have followed up with, “That is awesome that you guys are doing that, lots of people wouldn’t do that.”

I like to think that most parents would do this for their kids.  If they had the resources available, and the means to access it, I would hope that all parents would strive to do anything for their kids.  I was given the huge blessing of being Colin’s Mommy.  Being his mommy requires that I do a “little extra,” so that’s what I do. 

I see so many parents every day doing the exact same thing that we’re doing:  juggling schedules, balancing budgets, and doing whatever it takes to help their children.  We aren’t special, we are just special needs parents.

Our kids deserve the best, and that’s why we do what we do. 

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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!

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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. 💙💙