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This is our story.
As I closed my eyes and tried my best to fall asleep, the events of the day kept creeping back into my mind.
I watched as my husband Mike fell asleep beside me, his chest rising and lowering again and again.
“I need to say it. I need to just say it out loud.” I kept thinking to myself. But the words, as they had been for months, seemed to be stuck.
“We can’t live like this anymore. The worry is killing me.” I thought as I reasoned with myself. “But if I say it out loud, then it’s real.”
I finally reached over and shook Mike awake. He rolled over and looked at me with groggy, concerned eyes.
“I think something is wrong with Holden.” I did it. I said it. It was now out there.
Mike and I sat in bed for the next hour as I told him about our disaster of a play date earlier that day. How all of the other toddlers played with each other, babbled and enjoyed life. While Holden was agitated, withdrawn, and irritated by the chaos and noise from the other kids.
I told Mike how I sat there, cross-legged, on the ground trying to juggle our newborn daughter on my lap and pacify our panicked toddler simultaneously. As sweat poured from my forehead while I breastfed my new baby (yet most of my focus was on our son who desperately wanted out of there), my eyes darted to the other moms, some with expressions of sympathy, others shooting me judgmental glances.
I told Mike how I needed that social interaction with other moms so badly, that my days isolated in our home were becoming darker and darker after failed play date after failed play date. I couldn’t go through one more day of attempting to host my friends and their kids, while I hid away upstairs with Holden – the only way to get him to stop crying.
Hot tears ran down my face as the words finally came. Relief came over me. It was real.
We both had been suspecting that something seemed a little off with Holden since he was around 10 weeks old. Holden was a fussy baby. Well, not entirely. When Holden was home with just me, he was happy. But as soon as we ventured out into the world he panicked. Countless times we left birthday parties and family gatherings early. I abandoned grocery shops halfway done, and raced past homes with barking dogs.
I had done my research in secret. I knew that testing was available at age 2, and Holden’s second birthday was fast approaching. I also knew that a child’s brain is most plastic before age 5, and that maybe, just maybe, I could find a way that Holden could enjoy life.
As the months passed and the testing process began, our life became consumed with research, tests, worry and determination that we would one day know how we could help Holden.
Some days we were filled with optimism as we saw small improvements, and other days we were devastated as we once again had to abandon special plans, because it was just too much for Holden.
Mike admitted to me that he drove around crying secretly in his car one afternoon, watching families enjoying parks and ice cream outings. Mike was starting to mourn the life he had pictured for his son.
While Holden went through the slow government process being tested, and consistently hearing “well, we see some good things, and we see some red flags, we would like to move him on to the next test,” Mike and I decided to take matters into our own hands.
Through my own research, I started to suspect that Holden was suffering from Sensory Processing Disorder. So, we brought in a private occupational therapist who specialized in SPD.
She worked with Holden and agreed that he most likely had a mild form of SPD, more specifically, being very sensitive to noise. Our OT gave us tools to Holden communicated with us better.
To learn more about Holden’s journey, the tools we used to help him and some helpful resources, visit my personal blog, Nesting Story.
Then our OT suggested a private speech therapist in our area that played a huge part in helping Holden. She was not only able to help Holden find his words, through narrating Holden’s play, but she also taught us more about language delays.
We did the best we could with the help that we had, and, by age 3, Holden was starting to blossom. He was officially diagnosed with a universal language delay by his developmental pediatrician. But as his mom, I knew there was still a missing piece to the puzzle.
Way back when doing my research, I had read about auditory processing disorder, and it seemed to fit what Holden had been experiencing. When Holden heard noises, he panicked. His brain couldn’t seem to sort out the information, as he heard sounds.
Auditory processing disorder (APD), also known as central auditory processing disorder (CAPD), is a hearing problem that affects about 5 percent of school-aged children. Kids with this condition can't process what they hear in the same way other kids do because their ears and brain don't fully coordinate. Something interferes with the way the brain recognizes and interprets sounds, especially speech. - kidshealth.org
When I looked into APD testing, I learned that Holden had to be at least 5 years old to be tested.
So we waited. When Holden was finishing first grade he was officially diagnosed with auditory processing disorder. In second grade, Holden’s school worked to get his teacher a microphone, and a speaker for his classroom. At home, we are more sensitive when giving Holden multi-step instructions, giving Holden a heads up when entering a loud situation, and Holden often uses his noise cancelling headphones when his little sisters are being loud and Holden is tired, especially after-school.
Holden loves life today. When Holden turned 5, I saw him really break out of his shell.
Although it is terrifying admitting that our son has special needs, saying it out loud and walking through the process has been the best thing we could have ever done for Holden.
You can follow Holden's journey on my blog, Nesting Story, on Facebook, Instagram and in our vlogs on our YouTube channel.
Opinions expressed by parent contributors are their own.