We do what we can to find any sort of connection with Nolan. In the NBC drama my wife and I watched, Parenthood, their son is diagnosed and their therapist tells them to try to enter his world instead of trying to get him in theirs. We try this approach every day…I’ll do my best to explain what Nolan’s world looks like to those of us who try to enter it.

Welcome to Nolan’s World

First and foremost, in Nolan’s world, pants (and usually underpants) are optional. He loves the freedom of commando (but c’mon who doesn’t?!?) and has a history of running into other people’s bedroom and rolling around in the beds butt naked. Is it necessary for the typical person to take off your socks when you pee? Nope. But, Nolan thinks so. Shoes are also something unwanted. When Nolan is feeling warm or even just wants to be more comfortable, he takes his shoes off. Most times we get him off the bus, he is shoe-less.  More than once a day I hear my wife exclaim, “Why can’t you wear socks to pee?”

In Nolan’s world, one must always be doing something to keep the brain stimulated. There is no time for “breaks” or “rest.” Daddy always enjoys watching movies with Stella and sports with anyone, but in Nolan’s world Mickey and Blaze are pretty much it, and usually just a few minutes at a time. The rest of his day is usually spent drumming, jumping, spinning, running, or stimming (which for him means hand flapping and make grunting or screaming noises). This makes things like church, restaurants, travel, and school very difficult for him and the family. What seems like stressful noise to us, is calming to him. You should see the looks on the faces of the moms in their vans in the school parking lot as Nolan walks by them, drumming on their license plates and doors. Sheer terror. I used to yell, now I just laugh. Nolan also has a tendency to find a useless household item and obsess over it. It may be a plastic vodka bottle, a hose reel cart, a shampoo bottle in our kid’s bath, a friend’s old dorm room garbage can, a bathroom rug, or those little metal stands that hold up pictures or dishes on tables as decor.

In Nolan’s world, one must always be snacking or drinking. Nolan as you know is nonverbal, but he has developed a clear way to tell you what he wants. He will grab your hand and physically tug you in the direction of need. Dude lacks muscle tone 24/7 until he needs a snack, then all the sudden he can tug a grown ass man out of his seat. It’s usually sweets, Oreos, soda, cereal, etc. But Nolan also enjoys the sensory of chewing ice cubes and sucking on ice packs and wet rags. Yeah, we actually have to lock our fridge so he doesn’t steal something and leave the door open. The cold and wet is very stimulating to him. He has also started biting at his thumb, leaving it red and raw. We do what we can to stop this and provide alternatives, but like other things, he is fixated. He is very orally sensitive in this way, which makes tooth brushing a huge struggle every night. Can you imagine pinning your kid down every night to brush their teeth? EVERYTHING is fair game in the mouth. This toy, in his mouth. His therapists hair, bathwater, icepacks he steals from the freezer, in his mouth. The snails in the lake by grandma and grandpa’s cottage, in the mouth–which can result in him sharing his world with his parents in the form of Cryptosporidium. Hashtag 15 pound weight loss.

In Nolan’s world, things most kids are obsessed with (Santa, presents, Easter bunny, playing with friends, impressing others, parades) aren’t interesting. Give the kid a foot rub, a license plate to drum on and enough room to run around after, and he’s golden.

In Nolan’s world, danger is nothing. The boy is getting big but he loves being thrown in the air, squeezed, and spun around so everyday is an arm workout. He loves to climb on things and walk the line to terrify his parents. “Nolan get down.” ALL. DAY. LONG. He does have fears though. I can’t open our shed when Nolan’s outside because he is afraid of the riding lawn mower. He also doesn’t do well in public bathrooms or locker rooms because of loud hand dryers and toilets flushing. Parades have notoriously been rough due to firetrucks, but he refused to wear headphones. Mostly we think he’s afraid of it starting when he isn’t expecting it. In his world, noises happen when they’re expected to happen I guess.

Entering Nolan’s world:

Maybe he won’t ever be interested in entering our world, maybe he will. But we will keep trying to enter his however (and as frequently) as we can. We are far from experts, though. What makes it difficult is that it’s always evolving, always changing. Something he loves today, he may be apathetic about tomorrow. Today he could stand being in the tub while Bryce cried, tomorrow it might terrify him. He had been on a streak of doing well with haircuts in recent months, but the last one was a nightmare. 

So how do we connect with him? Maybe it’s taking a break from the hustles of life to sit next to him and feel the wind and watch the trees branches sway, he loves watching the flag waving back and forth. It is pretty neat, isn’t it? Or pick up that leaf he’s been staring at. My, nature really is captivating when you stop and actually open your eyes. Sometimes entering his world means being that fat guy on a kids trampoline spinning in circles. We do have three trampolines at our house! Or it may be laying on our living room floor drumming an old license plate. We do what we can to understand him. We feel silly. We look silly. We don’t care.

Every day I recite these quotes I’ve read along the way:

“Stop caring about what other people think and put your kid first. Then watch the miracles happen.”

“Score your day on the number of times your kid smiles, not the number of times he acts like a typical kid.”

Welcome to Nolan’s world. Keep your arms out and flailing at all times. You’re welcome here anytime. Just be sure to bring cookies. Oh, and leave your shoes and pants at the door.