She is Not Autism

A Special Needs Mom and Her Extraordinary Daughter

As parents, the moment we meet our children it becomes natural instinct to be sure they seize every opportunity for goodness in their lives. Though we cannot always determine who our children will be, we can do our best to lay a foundation that will allow them to go out into the world and become functioning members of society. For parents of children on the Autism spectrum, things are a bit different in terms of the approach taken to ensure that same life for them. However, it is possible for children on the Autism spectrum to live normal lives- and Lois Sterling is proving that every day as she raises her daughter, Norah Jane.

I have been following Lois and Norah’s journey on social media for quite some time now at her Instagram page @Life_WithLo. She uses the platform to be transparent about her daughter’s development, as well as the ups and downs of being an Autism mom. I am not sure if it was Norah Jane’s big, beautiful eyes and bouncy curls that reeled me in, or Lois’s extremely calming demeanor that kept me coming back (probably a combination of both), but I found myself invested in their journey together.

1 in 59 children are diagnosed with Autism. Lois says Norah’s development became a growing concern after her first year of life, and her pediatrician recommended she be evaluated. Norah had been showing signs of being on the spectrum; lack of eye-contact, flapping her arms, delayed speech, as well as not crawling, walking, or talking, and was diagnosed with Autism Spectrum Disorder Level One at a year and a half old. Lois says she remembers holding the documents in her hand, reading them over and over, unable to come to terms with the diagnosis.

A draining couple of months met Lois and her family after that. She knew very little about what autism entailed and spent all of her time researching the disorder and what she could do for her baby. “My husband thought I’d gone off the deep end. I was so distraught,” she expressed. But her only priority was to be sure that every possible resource was at Norah’s disposal so that she could ensure the same success for her as any other neurotypical child would deserve.

Lois says she has had to find ways to cope through a lot of self-shame after Norah’s diagnosis. Having been battling a severe eating disorder, Lois did not even realize she was pregnant until she was 27 weeks, and Norah ended up being a preemie baby. She so honestly expressed that it was devastating to know she had to be induced at 36 weeks pregnant because doctors did not think Norah was developing properly due to the lack of nutrition. Despite having adjusted her lifestyle to a complete 180 upon finding out about pregnancy, she still felt a sense of guilt for her daughter’s situation. “It seemed I had failed,” Lois says. She added that it was not that she felt shame in having an Autistic daughter, but that as parents, it’s hard facing that there is anything amiss with our children- and easy to blame ourselves.

The uniqueness of Norah’s situation has not always been easy to navigate despite all the research, tips, and tricks available to Lois. Meltdowns due to sudden routine changes and frustration to communicate have found Lois becoming crafty in her parenting techniques. She says the first several months were most brutal, and Norah’s physical strength during meltdowns was unbelievably hard to manage, but Lois has done her best to understand warning signs for her daughter in these types of situations.

“In a positive sense, it’s made me more patient with regards to Norah’s problem behaviors. If she exhibited problem behaviors, we do things like taking away toys, or do a time-out and talk about what it is she has done wrong, how it makes us feel when she does it, and make a point of her saying ‘I’m sorry’, then it’s all business as usual,” Lois expressed. She says Norah is “extremely in tune with emotions and takes note of others’ outward emotions and acts accordingly. So, we make it a point to never dwell on poor behavior.”

It can be difficult for Norah to express herself, and social interactions are her weakness. Public outings lead to a common misconception about Norah. Lois says she wishes people would try to understand that there are no set physical characteristics when it comes to special needs individuals. Because of this, she says some parents just chalk Norah’s unique behaviors to her being a “bratty child.” Though she tries to let the good outweigh the bad she says, “There have been a handful of interactions that have stuck in my mind as far as how cruel people can be, most especially children at such a young age. It’s heartbreaking to see children behave so coldly toward a child, knowing that it has been taught in the home. But for the most part, people we have interacted with have been kind and understanding.”

Lois believes early intervention has been most helpful. She formulated a plan with Babies Can’t Wait and began making sure Norah was seen at-home by a special instructor as well as physical and occupational therapists on a weekly basis. But she also made it her full-time job to be an extension of what those instructors were doing. She purchased sensory toys for Norah and put a routine in place that allowed for a balance between her teachers and her own performance play-based activities.

Now, Norah is in pre-school five days a week on top of her therapy. Though it is a long day, Lois says Norah is doing beautifully. She transparently admits that she feared Norah would remain non-verbal and not be accepted by others. This made it even more important to be sure Norah was given the best educational atmosphere for her. “Her speech has skyrocketed since November of 2018, as well as since she began ABA therapy in April of 2019. The quality of therapy they provide is incredible. Applied Behavioral Analysis therapy is a special treatment plan set in place after an assessment is performed. The therapy is not intended to be long-term, as others such as physical, speech, and occupational sometimes are.”

She admits that balancing it all can be hell at times- and exhaustion is prevalent in her life- but it makes those tiny little milestones Norah reaches that much more precious. Still, Lois told me she has found the lifestyle to be isolating, which she finds ironic because so much of autism is focused on lacking in social skills. But the label of being a “special needs mom” has made it hard for her to shift her desire to going out and seeking a circle of gal pals. However, she knows that for Norah to be 100%, she needs to be too. I appreciate that she expressed the self-awareness of knowing it’s a necessity to become more social, and work on meeting new people. As women, and mothers, and career-builders, it can be difficult to find a way to be just you.

Lois has been writing since she’s 10 years old and says poetry has been her only stable outlet. On top of the chaos of being a ‘Mama Llama’ inspiring her written work, she also grew up around immediate family members who struggled with mental illness. Seeking a place to put her thoughts, Lois found her way to writing. She says adding writing into her schedule actually makes her a better mother, though she makes sure she is always present for her daughter.

In fact, Lois is already a self-published author. Her poetry collection, Apothecary Bloom, is one I have read and grew to love instantaneously. You can read more about my take on it under Our Galaxy’s Into-Stellar Books blog here. But she hopes to one day get picked up by a “big-time publisher” and see her book in-stores. What’s more, is that Lois also has a passion for the arts. She has a bachelor’s degree in Art History and has been published three times in academia. She even owns her own photography company.

Lois wants to spread the message of compassion. “You have no earthly idea the courage it takes to step out your door to do something as simple as grocery shopping and having to leave a cart full of food at the door, because your child couldn’t handle the sounds, lights, crowd of people, etc. Just be more understanding and have more knowledge before you start pointing fingers in the name of bad parenting,” she says.

But most importantly, Lois wants her daughter to know, “that she is not ‘autism.’ Her name is Norah Jane and she just happens to have Autism. I never want her to think it’s a crutch of sorts, of that she can’t do things that others can because of a brain development delay. It’s a delay, which means she will catch up, and she’ll blow them all out of the water with how brilliant she is.”

Lois Sterling currently lives in Atlanta, Georgia with her husband and little Miss Norah Jane. You can follow their journey on Instagram @life_withlo, and keep up with Lois’s writing journey at @thetasteofmypen. The humble and graceful energy she projects shows even in the darkest of her writing, and is expressed all over the face of her miraculous daughter. “I have a beautiful life, with a daughter who has taught me the art of patience, using other ways of communicating without words, how to recover quickly from setbacks. She’s such a beauty in more ways than I’m able to convey.”

-Christine Weimer, @beacolorfulyou

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