Autism Awareness Month – A Mother’s Perspective, by April Love

IMG_7081 (1)
April Love with her son, Jack.

When I tell people my son Jack “sees the world differently,” they usually smile and nod politely. I like to think they get it, to think that small gesture means they’ll have compassion and empathy. But, I know in my heart it must be difficult for them to understand. I’d like to use this blog post to give you a brief glimpse into the life of my son, Jack, and our family.

ASD, or Autism Spectrum Disorder, is considered a brain disorder that impacts communication and social interactions, though that’s simplifying things quite a bit.  Depending on the severity and the individual, components of speech can be impaired, repetitive behaviors often occur, and a general struggle with socialization is common.

By the time we sought diagnosis for Jack, we already knew what the outcome would be, even though we feared it. We knew nothing about the “a-word” or what it would mean for my son’s future. Jack was a beautiful, sweet and loving almost 4-year-old who couldn’t communicate basic needs to us. He’d get seemingly lost inside himself, so focused on the falling motion of water, or leaves, or paper scraps that nothing could reach him. He could recite entire books and movies from memory, but spontaneous language was non-existent. We felt so much love, but struggled with fear, frustration and a dissolving hope.

IMG_8832_webResearch suggests early intervention, beginning as young as 2 years old, is key to unlocking these individuals’ potential. We were lucky. For us, the diagnosis came before Jack’s 4th birthday and opened up resources, support and community. It became a “golden ticket” that allowed us to connect to experts who know and love this field and to other families that understood the myriad of emotions we felt.  We were able to begin outpatient Applied Behavior Analysis (ABA), speech and occupational therapy within a few months, and we worked closely with our team to translate that learning to our home environment. But those resources are costly. Autism Speaks, an organization that advocates for autism acceptance, awareness and research, estimates that it costs $60,000 per year to support an individual with ASD. We are fortunate to have these resources available to us.

But even with these resources, there were many things that, as a family, we learned. When Jack first got diagnosed, an adult with ASD told me the “professionals” had it all wrong. “Spectrum” implies a linear progression in which your symptoms are mild, moderate or severe. ASD, he said, was really more of a “sphere,” where each individual expresses a combination of signs and symptoms at varying degrees to make a unique mix of characteristics that define their condition.

Our ASD “picture” is special. Jack loves to stim, meaning he uses repetition in different forms to block certain stimuli or produce a calming effect to combat overstimulation or anxiety. It can be distracting to others, especially if they don’t understand its purpose, and can impede his focus and learning. Auditory stimulation, one of Jack’s favorites, is driven by a love of certain sounds, which leads him to repeat words or phrases multiple times or, as another example, watch the same 15 seconds of a movie over and over again. This use of stim makes him unique, and by seeking to understand his habits, we can also help him apply them in beneficial ways. We are also fortunate because Jack also sleeps through the night, something I’ve learned can be extremely challenging for individuals with ASD, and his “meltdowns” are few, far between, and never violent.

IMG_7373_RTJack is as capable as any child I know. He just does life his way on his timeline. In a few weeks, he will complete Kindergarten, meeting all of his academic benchmarks. With the help of his teachers, aides and friends, he has been part of a traditional classroom and spends the majority of his day surrounded by his peers, something we were told during diagnosis might never be an option. He is learning to swim, taking gymnastics and ice-skating lessons, playing the piano, and loves Disney World as much as we do.

As a neurotypical individual and as an adult, I assume I see the world “better” than my son. I assume my years of experience put me beyond his knowledge & understanding. But, when I step back, I see that’s a lie. Jack sees so much that I miss.

The H wall_RT
As he bounced a ball outside, Jack noticed how windows on different walls outlined letters. Pictured: The ‘H’ wall.

A while ago, he was bouncing balls off of the walls that surrounded our deck. He kept asking me, “Mommy, can I throw the ball at the ‘H’ wall? At the ‘I’ wall? At the ‘E’ wall?” I smiled because he was happy and said “Sure” because I wanted to keep him happy. But the more he asked, the more I started to wonder what he was talking about. “Jack, where is the H wall?” He pointed, “See, Mommy, the H wall. And, that’s the I wall. And, that’s the E wall.” I never would have seen any of it if my 5-year-old (at that time) hadn’t blatantly pointed it out to me. But, there it was, outlined by the windows — a perfect H. He so innately saw what I couldn’t. It’s what makes the world beautiful & so worth exploring. There’s beauty and new hidden everywhere if we can just cock our heads to the side, open our eyes a little wider and SEE the world a little differently.

For Autism Awareness Month, I encourage you to adjust your perspective, to see the unique qualities individuals with ASD bring into this world.

April Love, MSN, RN, RNC-OB, is an instructor and ATI coordinator for the UAB School of Nursing. She received her MSN through the School’s Accelerated Master’s in Nursing Pathway in 2013, and she teaches fulltime in the pre-licensure portion of the AMNP and BSN programs.

 

 

 

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