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04/21/2023

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Breaking Autism Barriers: One Mama’s Journey

By April Roga, Manager, Contract Management

 

As we recognize Autism Awareness Month, I believe many people are already aware that autism exists. We’ve got that one covered. My advocacy lies in moving towards autism acceptance. In order for the neurodiverse community to be accepted, and especially in the workplace, I believe these are important takeaways to keep at the forefront of our minds:

  • No person is exactly like another.
  • We all learn differently (i.e., visual, auditory, kinesthetic) and process differently.
  • Don’t presume without first asking the other person if your presumption is correct.
  • Encourage/strengthen in areas where people excel vs. strengthening where they are weak.
  • Some people don’t have a champion in their corner. Find someone to champion today.
  • Today many parents are working and parenting children with extra needs; give them grace.
  • If you know someone with a loved one on the spectrum, ask how you can best support them.

Our Story

After being told I would likely miscarry in September 2009, an extension of my heart and soul was birthed on May 14, 2010. Morgan was born with 10 fingers, 10 toes, and he was perfect to me.

His infancy was filled with weeks of inconsistent sleep along with fussing, crying, and screaming, no matter how full his tummy was or how much physical comfort was given to him.

At six months old, he would say “dada.” He had that word in his vocabulary for two or three months, before that word left forever.

Within his first two years of life, we invested many hours with pediatricians and specialists to figure out Morgan’s allergy and stomach issues along with his substantial cognitive delays.

By the age of two, he still wasn’t babbling, pulling himself upright, turning himself over, or making any attempt to crawl or walk. Fortunately, we finally found a pediatrician who recognized the need to get the issues addressed swiftly. He referred us to Tennessee Early Intervention Systems (TEIS) where my son underwent a series of assessments for several months.

The most important thing I learned is the importance of addressing cognitive delays before a child turns three years old. I believe that age three is every state program’s cut off age for early intervention services. Not only can you get free assessments and diagnosis prior to age three, regardless of income, but those are the critical years of child development.

If I waited months or years to get my son into occupational, physical, and speech therapies, I believe his journey would have been more difficult. That’s because he would have already formed bad behavioral habits. Going through the state’s early intervention program also provided a smooth transition into the public education system when my son started pre-K.

Fast forward to April 2023. My son will be a teenager next month. He is still completely nonverbal. He still wears pull-ups. He still cries and has anxiety about baths, showers, haircuts, doctor visits, and certain loud noises, like a car wash. And sometimes, when he doesn’t feel well, he might lay down on the floor and bang his head out of frustration. However, thankfully, these moments are now very rare.

When my son was a toddler, and first diagnosed with autism, outings to restaurants and stores were hard because we felt like everyone was staring at us. My son would flap his arms, hands and make sounds that others might deem as odd. At one point, I didn’t want to leave the house because of the judgment. I quickly realized the world needed to see more children like my son. I refused to box him in a bubble. He was not broken. He was not unworthy. He was beautiful and pure, and I wanted to take him out into the world so he could light it up for those who were having a bad day.

Now my son will be 13. He’s no longer that cute little baby that flaps. Now he’s a young man who flaps and makes noises. And that sometimes scares people, especially those who have never been around someone on the spectrum. Some people give annoyed stares and some jump out of his way at the supermarket. As my son’s advocate, I do my best to educate with kindness whenever the opportunity presents itself, like today – writing this article and sharing our story.

National Autism Awareness Month

My son is my greatest blessing, and we are spreading a message of hope, positivity, kindness, and grace wherever and whenever we can. Thank you for sharing a bit of our journey!

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