Mother’s Intuition
For months, I watched him like a hawk, just knowing that something was off. From the time I was pregnant with him, I worried- something I now credit to God as a gift of some crazy mother’s intuition.
I did everything most mothers with children with speech and social delays do: Google until they go insane. Did he have a speech delay? Did he have autism? Certainly not autism, let’s Google “autism-like disorders” 47 times a day, instead of agreeing with the idea that he could be on the spectrum.
Visiting with the Pediatrician
When I pushed at our pediatrician’s office that I KNEW something was wrong, our sweet doctor referred us to a local organization that evaluated children for autism spectrum and other social disorders. I went with the letters “PDD-NOS” resonating in my head as his potential diagnosis, after all, he was still so loving and affectionate, not a “typical” child with autism.
We watched as Knox didn’t do one thing after the next that he was instructed to do, and were horrified when he did random things he’d never done before (like lick the wall; seriously, kid, you’re killing me slowly).
All the while, I’m sitting here tallying skills in my head and watching the specialists check boxes and write notes. After a few hours, they sent us home to wait through a painfully long evening for the phone call.
Receiving the Diagnosis
When the phone finally rang, I answered with a lump steadily rising in my throat. I didn’t hear much after “autism.” I sat on the stairs, my husband in the other room with Knox and our six-month-old, Brody. I held it together almost until I hit “end.”
And then I lost it all.
The months of stress and worry exploded out of me in a silent, hysterical sob. Not my son. This was not him. He didn’t have autism. This had to be a mistake.
At that point, my husband was calling for me, knowing that I’d already hung up. He took one look at my face and his fell. All along, he’d been a champion for Knox being a late bloomer and “fine.” He was shocked and already talking about second opinions.
That second opinion confirmed the original diagnosis about a month later. It was my rock bottom, but as Christian writer Jon Acuff said, “for some people, rock bottom is a trampoline.”
I jumped into “organized mom mode” and started to do absolutely everything I could. Knox was already receiving services through BabyNet, but now that he had an official diagnosis, we had to do ALL THE THINGS. Why? Because if I weren’t busy, I would have to think about this, and because as moms, when we can’t do anything, we try to do everything.
For a while, this was my cycle. Busy, busy, busy, cry, cry, cry. Rinse and repeat. Eventually, I had to take a hard look at my new reality and learn to accept it. It wasn’t easy, and it still isn’t easy.
God can take all of those hard things and turn them into something so much better.
Autism has saved my life.
Learning to Trust
I have prayed more since Knox has been diagnosed than I’ve ever prayed in my life, and let me just say: I am a prayer warrior. I pray when I drive, I pray when I cook, I pray all the live-long day. BUT. This fervent, begging, heartbroken praying that I started to do changed me completely from the inside, out.
I was raw and real with God as I have never been because I had never felt so helpless and broken. It has brought me into such a powerful relationship with Jesus, and I could never have been here apart from it. Autism caused my husband and me to pray together for no other reason than we simply couldn’t find the strength to do it alone.
If you just received a hard diagnosis, let me encourage you to pray over it. Pray a lot. Over time, that pain of the diagnosis will fade away, and your amazing love for your child will come back into the forefront.
Don’t let a diagnosis define him- he’s so much more than just a word.
Thanks to Jessica of My Coffee is Cold, for writing this story and sharing her journey.
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I LOVE this post! I was the same way with Carson. When Dr. S. told us the diagnosis I broke down in her office. That was a year and a half ago. Some days are harder than others but we get through it. Carson is putting more words together now and is using the potty. Yay! He’s doing things I thought he would never do such as pretend play. He’s three and I never take any milestone he meets for granted. It’s the little things that make me so happy now!
Jessica, what a beautiful story about Knox, I don’t know if you remember me, I was Knox Sunday School teacher when he was in 2 year old class with Megan Williams. Megan and I both enjoyed teaching and loving on Knox, he was special but had such a spirit of love and joy for running and playing. Your story is such an inspiration to other parents with children with special needs, thanks for sharing your story. God Bless you and your precious family. I’ll always have a special place in my heart for Knox. Love Ms. Shelia
Jessica, this is a beautiful blogpost and beautifully put. It has brought tears to my eyes.
In January, my son Vince received a diagnosis of a brain tumor. Although autism and a brain tumor are different examples, what you have said here rings true for both. I also was doubtful until the second opinion.
You can read about the horror of the day of the diagnosis here https://vincesrecoveryjourney.blogspot.com/2014/01/my-son-has-brain-tumor-and-i-am.html and his story here vincesrecoveryjourney.blogspot.com
God bless you and your son!
Thank you for sharing. Having a special needs child is a roller coaster; for us just getting the diagnosis took years of ups and downs. You see, my son hit all of his developmental milestones. I took him to Early Intervention after my pediatrician shrugged off my concerns (he told me I was looking for bragging rights – I just needed to be patient and let my son mature at his own pace). EI refused to give us services because he was not delayed. We went through two private evaluations and got ADHD-NOS with SPD. Then, our behavioral therapist at a local children’s hospital recommended another evaluation. Finally, at 7 years old, we got the Aspergers dx. So it was almost a relief when we got the autism diagnosis, although it was still emotional. I was angry with God for a long time -why did we have to go through so much just to get a diagnosis? Why didn’t He send us to the right doctor in the first place? Why let us go on for years with no resources, support or clarity? I will probably never have answers to those questions. I have learned a lot about myself and my faith through this journey.
What a wonderful, encouraging and helpful post. I know that it will be a blessing to so many people. Thank you so much, Jessica, for sharing so openly and honestly, and thank you, Sara, for sharing this post with us at Hearth and Soul.
April, thanks so much for visiting. I love Jessica’s story and her heart to share with others. Have a blessed week ahead.
Thanks for sharing at the Inspiration Spotlight party. Touching share. I have a daughter who has dyslexia. She’s grown into a beautiful young woman, with many talents. When you do find out things are not the norm it’s great when you find the support of others and teachers. I agree don’t let the diagnosis define them. There are plenty of programs to help children reach their highest potentials. Stay strong in your faith and parenting. Love big.
Yes!! It’s so important to let them know that their diagnosis doesn’t define them. When my son was diagnosed with autism, at first I didn’t want him to know. Then I thought that was silly and made it sound like there was something wrong with him. I didn’t want him to think that just because he may learn differently compared to those in the mainstream, that there was an issue. I have another child with dyslexia, and that kid can create the most amazing things! I want them to focus on their strengths because while one child may have a hard time spelling or reading, no one in the house can do logic or analysis like him. 🙂 Thanks so much for visiting.
This is so encouraging to read. Although we have been pretty sure since our son was a year old that he was on the spectrum, our original pediatrician wanted to wait it out and see how he developed. As the years progressed, we eventually moved and a new pediatrician had our same concerns. We got a diagnosis of High-Functioning Autism. It’s hard most days. No one understands because he looks so normal until they spend 2 minutes with him. Thanks for the encouraging post! God made our little ones special and they enrich our lives so much.