What I Wish I Would’ve Known The Day We Received Our Autism Diagnosis

What I Wish I Would’ve Known The Day We Received Our Autism Diagnosis

Thank you to everyone who responded to the post last year about Baylor’s autism journey. I received so many messages and encouraging words – it truly touched my heart. For the first time, I had friends opening up about autism concerns in their kids, asking me questions and looking for guidance. The way the Lord used me was very humbling. There is nothing more important to me than making people feel less alone and broken in this life. I consider it my ministry.

As a follow-up to our story, I wanted to share what I’ve learned since Baylor’s autism diagnosis 2 years ago.

The school he attends completed an ‘educational diagnosis’ on him when he was in Kindergarten. They did this because we didn’t have a medical diagnosis from our psychologist at the time. They were trying to get him the resources he needed from an IEP perspective. To our surprise, his teacher scored him significantly autistic in several categories on the educational paperwork. Chris and I were confused and scared. We didn’t think he was significantly autistic.

We took those test results to the psychologist and based on that data, and the data she gathered on her own, she agreed to give Baylor a mild autism diagnosis. That day, as I drove back to work, thinking of the ranges of diagnosis’s…. not knowing which one was most accurate… I just sobbed and didn’t know what I should do next.

I was also pregnant with Wells and was overwhelmed to think I could possibly have another boy with autism.  This was the day that I realized I needed to quit work and dedicate my time to getting Baylor the help he needed. It was one of the most heartbreaking and life-changing days of my life.

Since then, so much work has been done. With the help of teachers, ABA therapists, a bio-med doctor, and his sheer will-power, Baylor has overcome challenges that I thought would be so hard for him. He’s reading chapter books, making friends, eating school lunches (praise!!!), he’s kind, thoughtful and loving. He’s progressing so well, and it has eased my heart so much. Now that I have this perspective, I wanted to share the things I wish I would’ve known on the day we got his autism diagnosis, in hopes it would help ease your heart, too.

  1. Don’t blame yourself. Do not, for one more second, blame yourself. Autism is nothing you did, did not do, should’ve, would’ve or could’ve done. You are not the cause. All it will do is drain you to nothing but a shell of a human being. Right now, he needs you. He needs that precious energy, and so do you. He’s on the autism spectrum. A lot of people are on the autism spectrum. Move on.
  2. Pray. Pray in the car. Pray before you go into the store. Pray in the store. It can be as simple as “God, I need you! We need you. I can’t do this without you.” Short and sweet. Just pray. Prayer was, is, and always will be, in my opinion, the most powerful weapon in your arsenal.
  3. Lighten Up. Learn to laugh and laugh a lot. Laugh as much as you can. It sure beats the hell out of crying. And truth be told, crying won’t change a damn thing anyway. Laughter will be the second greatest weapon in your arsenal.
  4. He doesn’t need fixing! He is not broken. Focus on helping him to evolve. Help him, teach him and work with him towards evolving into the person God created him to be. Accept that he (just like “typical” children in this sense) will be who he is. Not some ideal of a picture you had in mind. He is unique. He is one of a kind. He just needs a little more help along the way.
  5. Treat him like every other child. When he’s at home, give him little special treatment. Give him the same structure as his siblings. We expect Baylor to do all the things he should be doing at 8 years old… wash himself, dress himself, brush teeth, brush hair, find something to eat, get the mail, bring the trash can down the driveway. The bar is set high because we know he has the skills.
  6. Be patient. Be patient a lot. Learn patience quickly. And I don’t mean just with him. Be patient with yourself, too. You’re not perfect, and you don’t need to have this all figured out. No one expects you to. And you know what else? No one else has it all figured out either!
  7. Avoid autism tunnel vision. Do not make it all about autism all the time. Quit with the “If he didn’t have autism he would/wouldn’t do blah, blah, blah.” While sometimes that may be true, sometimes it’s not. Sometimes he’s stinky because he’s a little boy. Sometimes he’s cranky because he’s a little boy. He’ll have some good days, and he’ll have some bad days. And sometimes that will have absolutely nothing to do with autism.
  8. Get thicker skin. Ignore the stares and silent glances. People won’t always be kind or compassionate. Forget them. You walk in like you own that store or restaurant. Walk in like you both belong there. Because you both do.
  9. Embrace the curveballs. There will be times when curveballs will happen — skills your son will acquire, then without cause or explanation, lose. There will be times you’ll think a certain less-than-desirable behavior is under control, and then — boom! — it’s back with a vengeance. But you’ll learn this is all part of the ebb and flow of autism. He will progress, he will regress, he will progress again. The curveballs will happen, but you’ll learn to swerve.
  10. Love him. Love yourself. Love the journey. Above all else, the love is what will keep you going. And here is where you have an advantage above those who have not been on a journey like yours. The love you’ve gotten to experience is unlike any other love you will ever know. It has pushed you, pulled you, damn near broken you, and because of that, it’s the strongest love there is. It has been pushed to the brink and withstood Every. Single. Time.

In the two years since Baylor’s autism diagnosis — I am different.  I don’t look at people the same. I don’t judge. I’m kinder. I’ve met some of the most amazing people along the way. Therapists and teachers, whose life’s-callings are to help kids like mine succeed… my heart could literally explode with gratitude. As a result of knowing amazing people like this, I am a better person.

This journey is not for the weak. It doesn’t necessarily get easier. There are no promises that it will… but my boy is the same boy that walked out of that office after receiving his diagnosis two years ago. He is still the kind hearted, loving boy I’ve always known. He has just acquired more skills and knowledge.

I however, walked out different. I was changed. I walked out a badass. I just didn’t know it yet.

What I Wish I Would’ve Known The Day We Received Our Autism Diagnosis by popular Alabama lifestyle blogger Carli Best
What I Wish I Would’ve Known The Day We Received Our Autism Diagnosis by popular Alabama lifestyle blogger Carli Best
What I Wish I Would’ve Known The Day We Received Our Autism Diagnosis by popular Alabama lifestyle blogger Carli Best

The BEST big brother!!

Baylor- 8

Loxley- 5

Wells- 19 months

4 Comments

  1. Liz
    January 30, 2018 / 3:05 pm

    Love this! I have a 5 yr old son with high-functioning autism. As hard as it’s been, I’m actually grateful because the same way it’s changed you, it’s changed me too. I’m a better person and we’re a stronger, healthier family because of it.

    • Carli Best
      January 30, 2018 / 4:25 pm

      Thank you Liz! It’s definitely a rollercoaster! But I think keeping a good attitude and positive outlook no matter what’s thrown at us, helps our boys progress quicker! Thank you for reading.

  2. Sara Miller
    March 22, 2018 / 1:29 pm

    All such amazing points! My Jonah was diagnosed at age 7 at the end of first grade. So many things we should have bought before that – we wrote it off as him being quirky. We can’t dwell on the shoulda-coulda-woulda’s and just deal with the present. He had 3 years of ABA, and is in a mainstream classroom performing at grade level (and is getting almost all As). I can’t ask for more than that. As my husband said in the beginning , “He’s still Jonah, we just know something new about him now.”

    • Carli Best
      March 29, 2018 / 1:22 pm

      Thank you Sara! ABA has helped us tremendously too, I wish I was given that option first instead of Speech/Occupational Therapy but I didn’t know… we lost a few years that could’ve been less stressful… but oh well, it’s a part of our story. Which is why I tell everyone about ABA now 🙂 I’m so glad Jonah is doing well! Perspective is everything!

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