Just about to go to the closing ceremonies for our first week of Joni and Friends Family Retreat. It was a beautiful week. Praise. Laughter. Joy. The Church being the Church. I look forward to this all year. Being with these great families lifts my spirits, and reminds me how awesome God is.
Tag: special needs
My son Zach has 32 Zhu Zhu Pets. For the uninitiated, Zhu Zhu Pets are animatronic hamsters which, when activated, make a variety of noises (coos and purrs, as well as words and nonsense noises) and explore their environment; one can buy a host of accessories, as one would for a real hamster, but they will also zip around the floor, responding to various stimuli they encounter. There are dozens of distinct “characters”, each with a name, and unique coloring, markings, and phrases that they say.
Since I told you Zach has 32 Zhu Zhus, I probably don’t need to tell you that he loves them. He will set up tracks, and then line them up to all go through the track one at a time. He will set them all up on the dining room floor and then activate them, so that the room is over-run with furry, squeaking robots. And, when one of them ceases to properly function (the most common problem is that the button on their back, which activates them, will break) Zach is grieved. We are currently going through a mini-crisis, because Zach wants to replace Rocket (or Rock-it; I forget). Rocket appears to be out of production. Rocket’s not coming back, and Zach’s not happy about it.
But the amazing thing I wanted to tell you tonight is that Zach knows them all, by name. At bedtime, Christy told Zach to pick up all the Zhu Zhus and put them in a new plastic bin we have for storage. Zach dutifully moved from room to room, gathering up pets and putting them in the basket. Christy tried to join in helping him, but this proved problematic, because even after all of the pets seemed to be off of the floor, Zach kept searching, saying “Zhu Zhus. Zhu Zhus.” Finally, Christy showed him the basket, and together they inventoried all of the pets that Christy had added to the basket – he was still looking for those pets! As soon as the inventory ended, Zach went back to searching, now saying “Zuzu. Zuzu.” “We got all of them, Zach,” said Christy. “Zuzu. Zuzu,” said Zach. And then we remembered: there is a Zhu Zhu pet named Zuzu.
Josh remembered what Zuzu looks like (which was amazing in itself, since Josh doesn’t have any affection for the Zhu Zhus), and we all continued to search for a light brown puffball that looks a little like a porcupine. Sure enough, Zuzu was hiding in the bathroom.
Zach still has a hard time forming sentences, and really can only do it for things he wants or needs. Zach can’t always remember my name. Zach forgets basic safety rules, like ” no wandering away,” or “no walking into the street.” Zach has a hard time connecting with new people.
But Zach’s not stupid. He can look at a box with 31 of his pets, and he knows which one is missing, and what it looks like. And he won’t stop until all 32 pets are together in the box. Is that an obsessive behavior, or is he shepherding? I’m going to choose to see the latter, and I’m going to pray that it’s a little bit of the image of Jesus in Zach, a child of God.
Night On The Town
So, I noted on Facebook tonight that I had an interesting experience at Toys R Us:
Zach and I went to Toys R Us to buy a video. From the moment one walks in the door of our local Toys R Us, there are prominent signs inviting shoppers to make donations to support Autism Speaks. As we waited in the check-out line, I noticed additional flyers taped to the cash registers and counters encouraging donations through the cashiers. We were third in line, and Zach was doing the things Zach usually does while he waits: he bobbed and danced around, tried to get me to buy him M & M’s, and periodically dropped hints that we should be done waiting in line. Zach has a unique way of enunciating single words with the aim of motivating the listener to immediate action. He says the word clearly, with an intensity that starts in the middle of the word and then builds through the end of the word, communicating intensity – “ride” means “it is time to go ride in the car RIGHT NOW”; “car” means…well, it means the same thing. So, here in the Toys R Us line, he kept saying “ride” and “bag,” as in “put my video in a bag so we can go RIDE in the CAR. NOW.” He wasn’t being particularly difficult about any of this, or invading anyone else’s personal space, but it was constant movement and/or sound, which is normal for Zach.
As we waited, I noticed that the cashier had a list of questions for the person in front of the line, which she asked with little enthusiasm: “Do you need a gift receipt? Do you need to buy any batteries today? Do you want to make a donation to support autism? Do you want your receipt in the bag?” When that customer was finished, the next customer got exactly the same list of questions.
Then it was our turn. “Do you need a gift receipt?” No. “Do you need to buy any batteries today?” No. “Do you want your receipt in the bag?” No. And I noticed, no invitation to make a donation to support autism. No change in the enthusiasm or empathy level, but a change in the question routine. And as we began to move for the exit with our video in hand, I could plainly hear the questions for the next customer: “Do you need a gift receipt? Do you need to buy any batteries today? Do you want to make a donation to support autism? Do you want your receipt in the bag?”
So, what to make of this? I joked about it on Facebook, and I do think it is a little bit funny. Zach may have done a little bit to help raise money for autism in those 10 minutes. If he had been more irritable (which happens sometimes) he might have hurt the cause, I don’t know.
But I’ve got another thought on this, too. Maybe I, a dad with a son who plainly has autism, want to give to support autism research. Certainly it’s true that living with autism has had a financial cost (to speak only of the currency in mind in this transaction), but aren’t there breast cancer survivors who do the Komen walk for the cure, and raise and donate more money besides? Don’t lots of people find ways to give generously to the causes that touch them most personally? So why would the cashier pass up this opportunity to invite me to do the same?
I’m not sure (and I’m not offended or mad, either, to be clear). Maybe the thought is that I might already give in more intentional ways than a quick hit at the check-out. Or maybe she felt awkward asking me to give while Zach was being so insistent about moving on. I don’t know. However, I do know that one of my favorite things is not standing out just because my sons have autism; being just part of the crowd is nice sometimes. I know that many people with other special needs or disabilities express that they feel the same way. They don’t want special rules or concessions. If they need them, they’ll probably ask for them, and then they hope you’ll be ready to help. And in that way, they’re/we’re pretty much just like everyone else.