I could go on and on about the reasons for our silence (I had a ton of grants to write, Chad had a lot of school to attend, Nate got the croup) but, instead, I’d rather say that I’m glad you all remain faithful to reading about our family’s adventures, even when I have to take an unexpected writing hiatus. Over this past month, there’s been a theme in my life — staying two steps ahead of everything and everyone, especially Nate.
I remember a while back that a caregiver to someone on the autism spectrum said that he began to think more like an autistic person — and everyone went up into arms, saying it was offensive and autism isn’t like that and he was mean and cold and evil. I think the poor fellow got the short end of the media stick — and I can sympathize with what he was saying. While I am in no way autistic, I constantly have to get myself into the mode of Nate’s mind and anticipate what he will be attracted to, what will upset him, what will be an issue anywhere and everywhere we go. This ranges from the streets I drive on to the aisles I visit in the grocery store. I have to remember what Nate saw the last time we visited a place so that I understand, in his nonverbal way, what he’s trying to communicate the next time we visit the same spot.
Take Target, for example. When we walk into Target, there’s a party supply aisle that has a broken spinning wheel. It used to have an arrow that you could spin and it would suggest a theme for your party. The arrow is now a nub but Nate must spin the arrow nub every time we go in. We also count the characters on the wheel, count backwards from 3 to 1, sign “all done,” and move on. As we continue past the party aisle, we approach the grocery section that has Skinny Cow cones. Nate has become a connoisseur of Skinny Cow cones, in particular the mint chocolate ganache ones. Once we pick up an ice cream cone, Nate’s pretty satisfied for a while…until we pass by the Goldfish endcap. We pick up a few bags of those and then I get about 10 minutes to leisurely shop as Nate eats his cone with goldfish on the side. It is unacceptable to visit Target without going through these steps. It’s become like rote to me but, if Chad goes with us, I have to explain the steps we’ll need to take in order to have a successful outing.
And then there’s IKEA. There’s an appropriate and an inappropriate way to visit IKEA. Inappropriate: Go in through the exit, run into the warehouse, pick up a single item that you already knew you needed, and check out. This is not ok. Appropriate: Get a cart. Put Nate in the cart. Take the cart upstairs in the elevator. Go around the corner and take the elevator downstairs. (Yes, I get to miss the tour of the grand upstairs.) Then go through every single section of the downstairs display, as the arrows on the ground instruct, until we reach the end. First scenario? Five minutes, tops. Second scenario? Thirty minutes, at least. IKEA has also taken to integrating the stuffed animals that Nate loves throughout the downstairs displays. I feel like a spy, trying to avoid pitfalls. Is that a stuffed Labrador Retriever I see? QUICK! TURN DOWN THE DISHES AISLE BEFORE NATE STARTS ASKING FOR BIG AND BABY RALPH!!!
Just when I think I’ve got it down pat, stores go into spring cleaning mode. Three (!!!) stores simultaneously rearranged the location of their clock aisles. Target, IKEA, and Bed, Bath and Beyond all received lengthy visits from Nate, the clock lover, because I didn’t realize their new location. I had memorized and avoided the old locations of the clocks — but these vendors like to keep me on my toes, I guess. IKEA even scored some business from Nate, who is now the proud owner of a giant silver wall clock, which he hugged and brought on the car ride to school this morning.
On the highway, routes are mapped out very carefully. As we approach certain favorite spots for Nate (Trader Joe’s – stickers; Bertucci’s – olive oil and rolls; the froyo shoppe; promotional and American flags on the street), Chad and I need to talk Nate through each thing. A few minutes out, we remind him that we’re going to pass a certain place — but we’re not going there today, and we keep repeating this until we pass the location. Then we praise him for remaining calm (if he did) or talk him through calming down (if he didn’t). Sometimes we forget to warn him and all hell breaks loose. Then we have to talk Nate through calming down or attempt to distract him while driving.
And then there are the new situations. This past weekend, Chad was gone for a weekend retreat for school, so I planned a few special activities for me and Nate to pass the time, including a Sensory Showing of Muppets Most Wanted at a local movie theatre. Sensory Showings are awesome. They’re intended for people on the autism spectrum, who often find the movie-going experience to be too extreme: too loud, too dark and bright at the same time, too many smells from the cinema food and people sitting around you. Sensory Showings are scheduled early in the day (10AM) when few people from the general public are likely to attend. The lights are brighter, the sound is lowered to a normal level, and folks on the autism spectrum can bring their own snacks to meet their dietary and texture needs. They also skip the previews (because our kids lose interest quickly) and, being in an understanding audience, no one minds if your child has verbal tics or has the need to walk around the cinema the entire time.
We’d tried a sensory showing twice before but this was the most successful one. Nate was very excited to sit in his own seat with his sippy cup of water — and he finally weighs enough to *almost* hold the seat down. He enjoyed some Pirate Booty and another treat and made it through 50 minutes of the film before he hollered and signed, “ALL DONE!” (Will someone tell me how it ends?) Because it was thematic, I happened to pack a baggie of popcorn for Nate to eat (one of his most favorite foods) but, thankfully, didn’t give it to him in the cinema. On our way out, Nate spied a glass display case in the concessions area. It featured bright red (empty) bags that said POPCORN with pictures of kernels. Nate traced the POPCORN letters through the glass, pointed at the kernels, and signed eat. Then he moved on to the next identical display case and did the same thing. All told, we visited four identical display cases. On the last one, I surprised Nate with the bag of popcorn and we were able to leave with no fuss.
We’ve got one big “thinking ahead” moment to get through on the horizon: Nate’s most favorite restaurant of all closed without warning a few weeks ago. The Red Robin has been Nate’s favorite restaurant for as long as we can remember. When given a choice of where we will eat, it’s the first thing he picks on his iPad. Nate doesn’t particularly like the food but he does like their artwork, in particular a copy of the LNER (London and North Eastern Railway) Perfection poster from 1930. Every time we visited the mall, before and after we visit the fro yo shoppe (which is a must do on Nate’s list), we had to stop in Red Robin to visit this poster. We did it with such frequency that staff knew us and gladly allowed us to enter their restaurant without buying anything just to say hi to Mr. Perfection. We’ve spread more autism awareness than we can count through these visits, often greeting the family who was seated in the booth beneath Perfection and interrupting their meal with the explanation for our visit. I managed to find a copy of the poster in the United Kingdom on eBay, which I promptly bought. It took weeks for it to arrive and, when it did, it went everywhere with Nate. Unfortunately, Nate lost the frame clips and it’s now unprotected. I’ve hidden it from him until I can find a casing to protect it from Toddler Land but I truly anticipate that we’ll need to bring this picture with us to the mall when we break the news to Nate about Red Robin. I also don’t anticipate that it will be a graceful moment for anyone.
The “thinking ahead” component of life can be exhausting — because it is constant and always evolving. New things to remember get added to the list daily and I have to remember what to relay to therapists, babysitters, and Chad. If I plan things right, though, it does make for a better experience for all, and does give us great insight into the way that Nate’s mind maps out daily activities.
I’m going to be blogging more frequently in the coming weeks — both because my work schedule is (thankfully!) slowing down and because Autism Awareness Month starts today. Next up will be post about Nate’s favorite apps, as many iPad apps go on deep discount (or are free!) for this month. Stay tuned!