Month: January 2019

When God Answers

Prayer.

It’s our lifeline to God. It’s something we should be doing without ceasing. All day, just keeping up a constant conversation.

I don’t do it like I should.

At church yesterday, the pastor quoted someone (sorry, I don’t remember who it was) who said that prayer often comes out of desperation. When we feel like we have no where else to go, we turn to God.

I’ve done that.

When we couldn’t get pregnant.

When I worried about Colin’s development.

I begged and pleaded with God, “Please, God. Take it away. Heal him. Just fix him. Let him be okay.”

I prayed so fervently, at times alone in my bedroom down on my knees with tears pouring out of my eyes like waterfalls.

My prayers were answered, but not like I wanted.

And that’s the thing about God and answering prayers. He answers them, but it’s on HIS time table, not mine. He answers, but He isn’t a genie just granting wishes. He knows all. He sees the future. Back in those terrible years of worry, God could see the whole picture. He knew the path that we were on and He knew why we were on it.

I remember reading the scripture from Matthew that said, “He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” (Matthew 17:20)

Then I would question my faith.

Do I not believe enough? God isn’t answering my prayer. What am I doing wrong?

I had been down this road before as we went through infertility. In that situation, I learned that His plan was far greater than my own.

...but how could my son having autism be the better way?

I don’t claim to know God’s plan, and I don’t understand His ways. I also know that His ways aren’t always easy.

But…

I know that He is using our situation for good.

I spoke to another autism mom last week, and we talked about our faith. She said something that really got me. She said, “I sometimes feel defeated, but I have to check myself and just keep doing what I feel that God is calling me to do.”

That has been floating around my mind for the last few days: What God has called me to do.

Sometimes, what God calls us to do isn’t easy. It doesn’t seem fair. It’s hard…but when you’re where God wants you, things have a way of working out and just feeling right.

I would never have chosen autism for Colin…but I think this is is exactly where we are supposed to be. He’s happy. He’s learning and thriving right now. God keeps opening doors for me to reach out and help other people.

Through some mutual friends, I made a connection today and I’m super excited to work with her on her local project. We kept saying that God orchestrated our conversation and she said something that made me cry: “You and Colin have a special job, and God knew that, together, you would do His work. Things might be hard for Colin now, but when he gets to Heaven someday, all will be well.”

And I cried. (Curtis says that I cry about everything.) Sometimes I think God places strangers in your life and have them say exactly what you need to hear in that moment.

I admit, there are times that I think, “Why Colin? Why him? He doesn’t deserve a life that’s harder. Why me? I’m in no equipped to do this.”

But God is working it all out. I couldn’t handle autism, but He could. He has divinely orchestrated our journey every step of the way. I used to think that I chose the field of speech language pathology because God knew that I would have a son who would need me…I was wrong. Through my schooling and career, I have met the right people. I went down that path because that’s how I met the people I needed in my life.The people who would help guide me to the services that Colin needed.

So while God didn’t answer my prayers to “just take it away…” He did answer the other part of my prayer: “Just let him be okay.”

He is more than okay, he is wonderful, and happy, and thriving. Colin is exactly where he needs to be. After a year of ABA, today was his first full day of “school” at his ABA clinic. He got to eat lunch with his peers and have social time. Just look at that smile and you’ll see what he thought about it all:

Colin being at this center in and of itself is such an answered pray, I cannot even begin to describe how thankful and blessed we are to have his ABA team. I am so thankful that God worked this out for him.

And as for me, God knows that I have a big mouth. Maybe He looked at me years ago and said, “This one. She’s got a big mouth…how are We gonna use that?” And it’s true, I do have a big mouth. And I’m opinionated. And I want to make a difference for kids like Colin. While this isn’t the path I would have chosen for myself or my son, I know that we are right where we are supposed to be. God has a plan – as He has had all along.

Uncategorized

“What is Your Child Good At?”

Post author By Deidra Darst
Post date January 10, 2019
3 Comments on “What is Your Child Good At?”

I always try to think of relatable stories to share. What things might another autism parent be feeling, but think they can’t share? What do I want the world to know about autism today? This particular post is a little hard to write about, I’m not proud of it, but I would venture to guess that it has happened to other autism parents as well. So here goes….

When my son was two, I enrolled him in music therapy. He didn’t have an official diagnosis yet – I was still hoping and praying that it was “just a delay” – but I knew he needed some sort of therapy. I knew what speech therapy looked like, and he wasn’t ready for that. A good friend was a music therapist, and my son loved music, so off we went.

As I took him to the clinic, I sat down to fill out a case history. The final page said, “List some things that your child is good at.”

…….I drew a blank. I didn’t know what to write. There were no pre-academic skills that I could say that my child had mastered.

Let that sink in….there was nothing that I could positively say that my son was good at. At this point in his life, I was questioning whether or not he could even hear me, because he never followed a single command that I gave him, yet he sometimes responded to his name and always came running when he heard a favorite show come on the tv. He didn’t follow directions, he couldn’t sit for any period of time, he didn’t really play much, he didn’t color, do puzzles, and he definitely wasn’t talking.

I got mad at myself. I could have listed tons of things that his older brother was good at: talking, drawing, listening and following directions, sitting and attending, being empathetic, playing, interacting with other kids and adults. How sad is that? I couldn’t think of a single thing that he could do – he wouldn’t even attempt most things, so how would I know if he was good at anything?!

I went down the proverbial rabbit hole…If I can’t even list any strengths for him as his mother, how can I expect others to see positive things in him?

I believed in him – oh! Did I ever believe in him! I knew he was in there, I knew he had potential, but he hadn’t really shown it in any measureable way yet.

I think I eventually wrote some things about his personality rather than skills that he had mastered: he loved music, he was very loving and affectionate, and he was the sweetest little boy.

Fast forward three years, and he is a completely different kid. ABA therapy has been a Godsend for him and our whole family. He is learning and making progress every day. Today, I can write a huge list of things that he is good at: sitting and attending, counting, naming colors, matching, following directions, initiating communication, successfully going to public places, using his AAC device to communicate, completing puzzles, playing with his brother, the list goes on and on.

In the last year, I’ve learned that success looks different for him than it does his brother. He is smart, just like his brother, but he learns differently. When he was two, I was holding him to this standard – the standard in my head of what he “should” be doing – but that wasn’t fair to him. He learns differently. He needs specific instruction for things that other kids just pick up on their own. He can be – and is being – successful, but that success is coming on his timetable, not mine.

Success for most four year olds is learning to write their name or creating a masterpiece out of cardstock, glue and cotton balls while attending preschool. For my son, success is learning to identify pictures of everyday objects, holding my hand as we walk down the street, or learning how to play tag with his brother.

I don’t know what his future holds – will he ever be able to go to school? Will he be a verbal communicator? Will he be able to hold a job? Will he have friends? I don’t know the answer to those things, but I am choosing – everyday – to celebrate the things that I do know: He is smart. He is capable. I am giving him every opportunity to be the best, happiest, most successful version of himself – and I couldn’t be happier for every success and milestone that he reaches.

Uncategorized

The Other Side

The next song in my “Greatest Showman and Autism” series is “The Other Side.” Now, I don’t want to ruin the movie for you, but this song is basically Hugh Jackman’s character getting Zach Efron’s character super drunk and he agrees to work with him on his circus. Oh, and they dance on the bar and tables a lot.

My first thought was, “Okay, I can’t really relate this one to autism.” Okay, well, maybe autism parents just need a break for a strong drink every now and then?! Then it came to me…

So trade that typical for something colorful
And if it’s crazy, live a little crazy
You can play it sensible, a king of conventional
Or you can risk it all and see

Don’t you wanna get away from the same old part you gotta play
‘Cause I got what you need, so come with me and take the ride
It’ll take you to the other side
‘Cause you can do like you do
Or you can do like me
Stay in the cage, or you’ll finally take the key
Oh, damn! Suddenly you’re free to fly
It’ll take you to the other side

This song is about stepping out of your comfort zone. Just living your life every day. Doing what is expected of you – going with the flow, much like Carlisle (Efron) in the movie. I have always been that person. I do what others expect of me, I go with the flow, don’t want to rock the boat. I want people to like me, and I’m a people pleaser. There, I admit it.

Being an autism mom, though, that’s changed me. I have learned that just being easy-going and not rocking the boat, well, that doesn’t get my son what he needs. It’s been a process – one that I’m still working on – but I have to speak up. I have to fight. I have to advocate.

When your child is diagnosed with autism, no one is handing you the “Everything You Need for Children Who Have Autism, Where to Find It, and How to Get It” Manual. The world in general is not going to hand over everything that he needs. It is my job to research, learn what he needs, locate that, and then fight tooth and nail for him to get it. Our society isn’t set up for people who are different, but someone has to change that.

It’s been like taking a ride to the other side.

Yes, I am going to be “that mom.”

Yes, I will stand up and fight for my son.

Yes, I will be fighting for all children in our state.

It isn’t always easy, speaking up and “fighting the system.” But what’s that saying? The right thing and the easy thing are often two different things? Doing what is right won’t always be easy, but we do it because it the right thing to do.

Yes, I will probably be straying from the crowd and rocking some boats. People might not like that – others might judge me – but that’s okay because this is circus and my monkeys and I’m going to take care of them. If my child needs and deserves something, then by golly I’ll fight for it.

And maybe do some dances and musical numbers along the way.

Stay tuned.

Uncategorized

Dare to Lead by Brene Brown

Post author By Deidra Darst
Post date January 6, 2019
3 Comments on Dare to Lead by Brene Brown

I tell you what, I’m on a role for 2019 and book reading! I just finished my second book, Dare to Lead by Brene Brown.

I have written a couple of books myself. A few months ago, I found a review online of my first book that upset me. The reviewer said very nice things about my book and my writing, but then went on to say that I was a misinformed mother, because she just knew that my son didn’t have autism…

This really upset me because, one, what does this stranger know?! She has never met my child. I thought, “Oh, so you know more than every professional who has ever worked with him, huh?!” I fumed about it for a few days, and I mentioned it to a friend. She recommended Dare to Lead and sent me some quotes that made me think, “Okay, I need to read this book!”

I’ll admit, it’s a pretty deep book and I found myself skimming some of the sections rather than *really* digging in and reading (Sorry, Brene!). I did, however, get some good information from it.

I knew there was something different about Colin since he was six months old. As he got older, it became more obvious, and we got his official autism diagnosis at the age of three. He is almost five, and for the last four years, I’ve worried about him. I’ve worried about how the world sees him, how they’ll treat him. I’ve worried about how much progress he will make and worried about whether or not he will ever talk or live semi-independently.

Over the last year, I’ve turned my worry into action. If I want change to happen for him, I can’t just sit back and wait for it to happen – I need to instigate that change. That’s why I started my blog, why I wrote books, why I took the position as the state director of the Mountaineer Autism Project, that’s why I share our story.

…But putting yourself out there isn’t easy. In doing so, I subject myself (and my family) to judgement and scrutiny. If you know me personally, you know that I’m a perfectionist. I only do things that I know I’m going to succeed at doing. I’m a lot like Ricky Bobby and subscribe to the adage, “If you’re not first, you’re last!”

So recently I’ve been putting the pressure on myself. I want to do things for Colin. I want to make the world a more welcoming and accepting place for all on the spectrum. Brene (after reading her book, I feel like we are on a first name basis) talks about being in the arena, in the thick of whatever it is that you’re doing. It isn’t easy. You will fail. People will be watching, judging. The important thing to remember is this though – the people who are judging aren’t the ones doing. The ones who are doing are right there in the arena with you. They want to see this work just as much as you do – those are the people that you need to listen to.

Creating change isn’t easy. Brene had some great quotes that I wanted to share because I think are applicable to all of us at one time or another:

Courage is contagious.

Daring leaders who live into their values are never silent about hard things.

Integrity is choosing courage over comfort.

So in 2019, I hope that I have the courage to do what is right, even if it isn’t easy. I will speak up to create change where change needs to happen – and I hope you’ll join me!

Uncategorized

Come Alive

Our second post from “The Greatest Showman” series is “Come Alive.

During this song in the film, P.T. Barnum is gathering his performers. He went out and found people who were different: the bearded lady, the giant, the dog man – people who were considered “freaks.” I’m not here to argue whether or not Barnum was a good guy who helped the less fortunate gain employment and notoriety or a bad guy who exploited people for his own advantage (…but it was probably the latter). But regardless of his motives, he did give these people an opportunity that many would not have afforded them in that time. This song is encouraging them to come out of the shadows where they were so accustomed to living (or rather, hiding).

I see it in your eyes

You believe that lie

That you need to hide your face

Afraid to step outside So you lock the door

But don’t you stay that way

No more living in those shadows

You and me we know how that goes

I don’t pretend to speak for Colin, but as his mom, I relate to this song. When your child is different, you sometimes feel that you should hide them away. One, because life is a little harder sometimes when your child has special needs…Two, and this is the biggie – you sometimes want to hide them away for their protection. So people won’t stare, or judge, or make rude comments because they’re a little different. You want to keep them safe from the outside world that isn’t so understanding and accepting of their differences. Other times, it would be easier to just stay home because pushing Colin outside of his comfort zone can be difficult – for him and for me. Not knowing how he will react to something new is stressful for this Mama Bear. Not knowing whether or not the new thing will stress him out…and I will stress out if he gets upset.

When we are different – or our children are different – it might feel like the easiest answer is hide away, stay out of the public eye, fly under the radar…but we can’t do that. We have to expose our kids to the world. Dr. Temple Grandin, an amazing pioneer in the world of autism, says that the best thing you can do for your child on the spectrum is to expose them to new things. Give them opportunities, give them new experiences – this is how they will grow and learn.

Just like the song says,

‘Cause once you see it
oh you’ll never, never be the same
We’ll be the light that’s turning
Bottle up and keep on shining
You can prove there’s more to you
You cannot be afraid
Our kids are more than their autism diagnoses. Just like the characters in the movie – they have so much to offer the world when given the chance.

Don’t be afraid – come alive!!