Parenting Inside Out: Raising a Child on the Spectrum

North Shore Moms. Working Moms of the North Shore. Mommy Needs Vodka. My Facebook feed is a mini-map of my top priority, surviving motherhood. It’s hard for everyone. We question every decision we make starting from the first labor pain! Natural labor or C-section? Breastfeed or bottle feed? Stay-at-home or working mom? We face all of those life-changing decisions before we even see our precious baby’s face.

My favorite pastime is now my only exercise.

So, we put up human bumpers to give us comfort that our parenting decisions won’t send our kids to the gutter. Our mothers, our friends, pediatricians, and the entire parenting section of  Barnes and Noble give us peace of mind that we are not alone in our parenting paranoia. There is a comfort in our mommy networks; we are all following the same path. Until, of course, your child catapults you to a whole different kind of path.

Turning Things Inside Out

Going UP the slide. Autism or silliness? Neither. It’s Jacob!

First, he stopped saying, “Bless you,” after we sneezed. Then, he flicked lights in every room and stared at the ceiling. I didn’t need to compare Jacob to his peers to notice he wasn’t a typical two-year-old. The diagnosis of autism wasn’t a shock. But, since there are countless shades of the autism spectrum, the shock comes from a constant bombardment of experts, and those with expertise, getting it all wrong. You know who gets it right most often? The dynamic duo of Mommy and Jacob! Jacob has always had an incredible, creative way of combating the overwhelming sensory noises and challenges expressing himself. It just took me some time and education to translate those skills. The trick: balancing the world inside and outside.

The Pull Inside

Many autistic kids spend their lives in their own world in fierce opposition to our drive to drag them out. (Insert anecdote about Jacob’s lack of interest in being born in direct contradiction to my need to evict his 8 lb., 4 oz stubborn body.)  It turns out that Jacob’s insistence on crawling under a table or in my lap was his way of coping with a stressor from the outside world. My job wasn’t to drag him into, what he perceived to be, a dangerous place. I learned that I just needed a passport into his world to assure him he would be safe, so he could grab my hand, and join my excitement into our shared world.

But choosing which world is safe, the inside or outside, is not easy or consistent. Parents with autistic children tend to sequester ourselves in our homes because there is a tremendous amount of emotional pain when we give in to our natural tendencies to compare our children to the others. Jacob and I love the playground! But, it’s hard to maintain focus on his shining, smiling face when he is only swinging for hours to get his sensory needs met. It’s also hard not to wince when there is a toddler baby-splaining the design of the playground to his parent when your four year old has yet to tell you his favorite color.

There is also an autistic insider’s secret world of experts with strange language and letters after their names. Suddenly, a typical kid’s demand for cookies is an autistic child’s goal of “manding for a specific item” that must be graphed and documented. (Truth be known: the autistic kid is always going to get the cookie because they have impressed you by asking for “cookies in the blue box” when the speech goal is still trying to use 3-word sentences.) Sadly, the secret language of autism and ABA therapy, added to the specialized school staff and rules governing an IEP make you feel like YOU, the most intimate warrior for your child, is the outsider. It’s hard, but it is precisely in those moments when you have to use your Tiger Mom roar to get through to those on the outside.

Giving the Outsiders Inside Information

It doesn’t take long to remember that, diagnosis or not, you are the expert on your child. It does, however, take a long time and an unrivaled well of emotional strength, to make sure that message is received. You spend hours cycling from angry tears to irate emails trying to get the world to see YOUR child. On good days, I joke that at least I have a reason for my son’s behavior where other moms just roll their eyes and blame their child’s poor decisions on paternal DNA.

Jacob’s memories are in movies and music.

Now, I challenge everyone’s conclusion that my son’s behaviors are “because he is autistic.” The common autistic behavior of scripting, medically defined as echolalia, was a great example of a teachable moment for Team Jacob. Singing during nap time got Jacob kicked out of his preschool. The outside experts in early childhood became concerned that Jacob’s inability to stay quiet while peers napped was a consequence of his autism requiring a level of care the facility did not feel they could offer. I confess: I deferred to their outside expertise. Then, I listened to the songs and movies my son was scripting. They were all about Jacob’s thoughts and feelings! When he wasn’t singing songs like “Happy and You Know It,” he was changing the lyrics (of “Down By the Bay”) to “If you ever see a Jake, eating some cake.” A typical kid may have been babbling aloud about being happy at a recent birthday party. My son sings about it!

Spark Notes Summary

You know how they say you become a new person every 7 years because you  shed a layer of skin? We look the same on the outside, but we have grown immeasurably on the inside. Jacob is only 6 years old (I’m an overachiever), but  I’m a new mom. I’m Jacob’s mom. Yes, Jacob is autistic. He is also a huge fan of Blaze and the Monster Machines, can identify each planet by picture, and enjoys a dance party with his mother every day after camp. If you want to know anything else about my autistic son, ask me. I’m the expert.

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Amy Slutzky

This blog is about incorporating practical mental health boosters in your everyday routine. I am a wife, mother, sister…I am a counselor, teacher, advocate…I am a sci-fi geek, a public goofball, a faux Top Chef…I can attach dozens of labels to myself; so can you. My life is both unique and common. Read these blogs to make your life a little easier and your mental health a little stronger based on the lessons I have learned.

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