The Diagnosis: My Daughter has Autism

Sadie has autism. She doesn’t make eye contact. She is in her own world and doesn’t notice anyone around her. She doesn’t speak. She’s not potty trained. She doesn’t know how to play “appropriately” with toys. She’s regressed. She may never be independent. She can’t sit still. She has sensory issues. Sadie has autism.

The words coming from Sadie’s pediatric specialist that day made my stomach turn. She diagnosed her within minutes of meeting her. It was so obvious to her that Sadie has autism and it was something I feared but knew deep down. This was going to be her reality.

Sadie met all of her milestones on time, she could say several words at seven months, she was walking at 11 months, and was the happiest, most social baby that lit up the room. Everything was perfect, until it wasn’t.

Around 20 months we noticed a slight change. Sadie wasn’t talking like she was and she never wanted to engage with her brother Max or her cousins. The changes were slow and we joked that she was going to be quiet like her daddy. She had been such a social and outgoing baby and I knew deep down something was different.

Max had his one year well check up and that’s when I really knew she was regressing. The doctor asked all of the usual questions to make sure Max was developing on track and with every question I would get a pit in my stomach when I realized that Sadie either wasn’t meeting these milestones or had at one point and regressed. I told their pediatrician my concerns and she immediately wanted to get Sadie in the office.

The next week we went back and she gave Sadie an exam and observed her for a bit. She didn’t seem to think her behavior was something to be concerned about but she did recommend speech therapy. I immediately called a speech therapy center and before we could come in for an evaluation, she needed to have a hearing test. We got that scheduled the next week and found on that Sadie had 40% hearing loss in both ears due to fluid. She couldn’t hear so maybe this is why she wasn’t speaking.

Tubes would be the magic fix and we would get our baby back!

We scheduled the surgery a few days after her second birthday and she started speech the following week. I just knew this was causing her speech delay and had even heard that some children pull back and go into their own world when they can’t hear because it’s too hard and they just sort of give up. It made sense and I went with it.

A month went by and no change. Months flew by and I was losing her more and more. She wasn’t that funny, happy, social baby she once was. She was withdrawn, quiet, frustrated, and needed someone to figure out what was wrong and help her.

I remember googling and talking to my mom and sisters about my concerns and something kept telling me it was autism, but I couldn’t wrap my mind around that. One day my sister Meagan came over and started crying and telling me that she had done some research and Sadie fit most of the characteristics for autism. She was standing there crying saying our sweet Sadie can’t have autism.

That’s when I knew.

I got on the phone right away with her doctors office and was assured that couldn’t be the case and I once again went against my gut and pushed it aside. A year went by before she was finally diagnosed. That is something that I will always regret and feel guilty about. I should have listened to my instincts and should have pushed harder. She was in speech and had just started behavioral therapy (ABA) once a month which I didn’t have a clue what that was at the time. Crazy how things have changed.

We got an appointment at Cooks Child Study Center in Ft. Worth and I was told it could be a year before she is actually diagnosed. It took 15 minutes. Her pediatric specialist was amazing and so compassionate but also very straightforward with Sadie’s diagnosis.

Sadie sat in a room full of toys and dumped them out of buckets, threw them across the room, and was oblivious to the doctor trying to interact with her. With every question I was asked and answered “yes” to, I felt like I was dying inside. I knew what was coming but I wasn’t ready to hear it.

I fell apart several times during the interview. Bob sat there staring at the floor, knowing that his little girl was about to be diagnosed with something we knew nothing about and he couldn’t do anything about it. I felt like I had been kicked in the stomach when the doctor explained what she had observed and that she was diagnosing Sadie with autism spectrum disorder and she was on the moderate end. She said, “Sadie needs 40 hours of therapy/school a week.”

I was a stay at home mom and one that NEVER leaves my kids, so I couldn’t imagine spending a second away from them. The shock that came with that was unbearable and sent me over the edge. I couldn’t keep it together at that point and the thought of losing this precious time with her absolutely killed me. She was three and was expected to go from being at home with her momma all day to going to therapy 40 hours a week?

We left there that day confused and emotionally drained. I immediately got on the phone with therapists and the school to get a game plan for our girl.

And just like that our journey began. My daughter has autism.

 

Written by Courtney Whitehead

Courtney is the mom to the most amazing, sassy, sweetest little fashionista who also has autism. Sadie is six and her little brother Max is five and they’re just 11 months apart. Max is an old soul and loves his sister more than life itself. Courtney started a blog about a year ago to get her thoughts out and to record her families journey called Definitely Someday.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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