What to Expect - Oh, Wait...

There isn't one of those for autism. Would be nice if there was, believe me. But no, there isn't. Mainly because you can't generalize enough, all of our kids are just so different from each other.

I can tell you about Josh though.

So if you were to come visit or are just curious in an educational, compassionate, or train-wreck sort-of way, I give you this:  

 

A Visitor's Guide to Planet Josh.

 

1. Forget what you know. Josh will challenge and re-arrange your understanding of how we work in every way, from eating to socialization. As one of my readers, Meredith, put it so well recently, your context is not his context. Always remember that.

2. It's not you, it's him. Don't take anything personally. If you try to interact with him and he ignores you? It is not a reflection on you, what you've said or done, or how he might feel about you. I am probably the most important person in Toadie's life and he ignores me on a regular basis. I'm not offended or hurt by this, so, you shouldn't be either.

3. You might need ear plugs. If you cannot tolerate sudden, loud and often sustained noise, then you will need them. It happens frequently, good mood or bad mood. It's worst in the car due to the confined space. Also? Every toy that he really likes makes noise. The American Medical Association says that any noise that is so loud you have to shout over it to be heard, can potentially damage your hearing... Hmmm? I'm sorry, did you say something? 

4. Blue's Clues is everything. It's on the i-Pad 24/7. It's on the tv. It's what he scripts from. He'll script from it IN.HIS.SLEEP. The books and pages are all over the house. If you want to have what passes for a conversation with him? Better brush up on your Blue's Clues episodes because scripting back and forth with him is how that happens. I'd say 90% of anything he says has come from the show, even if he's changed the context or script to suit his needs. Twelve years and counting. It's not going away. Get used to it.

     4.1 Remembering the episodes will help you a great deal. For a few reasons. Mostly, if he's asking for one and you can recognize what he's talking about, then it will help you figure out what he wants more easily. But also, he loves it when you can script BACK to him. If he starts and you can respond because you remember what you heard on the show, then he will be very happy and excited. All of the sudden it's like you're speaking the same language, you've entered his context and that's cool. This is also true for certain Little Bear episodes.

5. He's not to be trusted. If it's quiet, find him because there's a good chance he's up to something messy. (see http://planetjosh.squarespace.com/journal/2011/1/29/so-this-was-fun.html, http://planetjosh.squarespace.com/photo-gallery/june-1st-2010-scene-of-the-crime/  and http://planetjosh.squarespace.com/journal/2010/7/28/toothpaste-is-stupid-also-the-purse-baby.html if you need reminding or haven't been here before)

6. He will probably hurt you. The more time you spend with him, the more likely this is. I don't like saying that, but it's a fact of life here. I'll refer you back to #2 as that is key - it's not personal, so you have to try very hard not to take it that way. He pinches out of frustration, anger, general upset because he doesn't understand those feelings and has no idea what to do about them. So he acts out. It gets him your attention, which he needs, even if he doesn't know what he needs from you. It also serves as sensory feedback when he jams his hand between your legs - it's about as far from sexual as you can get despite how it looks. It's important to know that.

7. Everything goes in his mouth. Particularly if it's dangerously inedible, like, staples or paper-clips, his own teeth...  Do NOT leave anything within his reach.

8. Keep the doors with the child-proof handle covers CLOSED. The bathroom is a bad place if Toad gets in there by himself so don't let him. He loves water. Toilets are gross and the bathtub is dangerous.

9. Forget how old he is. His chronological age means nothing except potentially when it comes to puberty but we're not there yet. Hopefully not ever. I can wish, leave me alone! Anyway. Don't think about him as though he were 12. Because it won't fit.

10. Get comfortable with nudity. Well, Toad's anyway! He goes through cycles and always has, so there are times when he's in a gotta-be-naked phase. Most people like Zach, or whomever is visiting, have found that yelling "JOSH IS NAKED!" very loudly seems to magically *cough* get him dressed again...

11. Always check the oven/stove before leaving the house. Do it even if you're not leaving. Toad apparently knows that the potatoes I cook in the oven for him require a cooking temperature of 450 degrees - and he will just turn the oven on to that at random.

12. He remembers everything. If you've told him something will happen later or tomorrow or in three days, you'd better be prepared to make good on whatever it is or suffer the consequences. He remembers. And he'll remind you. 

13. If he says "wrinkles" or "head please", it's good. This is his way of telling you that he wants to kiss your forehead. Which is his overt demonstration of affection. It's fairly heart-melting.

14. Sensory input is almost as big as Blue's Clues. Want to make him happy? Give him a bath. He adores water. Or pick him up and toss him around. Spin him in circles. Push him on the swing for 2 hours. Tickle him! Give him stickers that he can put on and then peel off his body. No stickers? Tape works too. If your willing to stay with him and clean him after, give him a marshmallow. Whisper in his ear, blow raspberries on his belly.

15. There are specific answers to some of the things he asks for/says. There are certain scripts he'll run if he's wanting things he knows he can't have or won't happen, like, going to the beach or on a boat, taking Zach to the pool. There is a way to respond to these scripts that he expects, even though it's not giving him what he wants, it's not saying "no" either. "No" is a bad word here on Planet Josh. We avoid its use whenever possible. Which segues nicely into #16...

16. If he's done something wrong or bad, STILL don't use the word "no". If he truly needs to be admonished (remember, our context and his are NOT the same!) find a way to do it without using that word. It's not just about denying him something, it upsets him terribly even when it's about safety or anything else. It can be done. You just need to be creative. Don't get me wrong, he's smart enough to understand that the message is the same. He just can't handle that word.

17. Yawning a lot and random coughing mean he's going to throw-up. So get a towel. Though I think he's the only person on the planet that can successfully stop the vomiting process once it's started - he hates it. And when he can, he stops it in mid process. It's kind of insane, and sounds like it hurts. How do I explain that he should just let it happen??? About as successfully as explaining String Theory to the dog.

18. If you don't already have one, grow a thick skin. The harsh scrutiny and occasional overt criticism you endure when he's melting-down in public is not fun. But you have to get used to it and you have to not worry about it or you'll never be able to go anywhere with him. You get the same reactions when he's happy and making a lot of noise. You just have to go with it.

19. He takes everything apart. Everything. With his bare hands. It's just something he does, like a compulsion. We're talking books, toys, furniture, kitchen utensils, carpet, tile, you name it. If he can get his hands on it, he'll have it apart. He looks for weaknesses, flaws, anything that will give him something to work on and exploit. He's managed to work a finger-shaped trough in to the slate surrounding our fireplace. He's been scanning the hardwood floor for years, trying very hard to get somewhere with the seams between the pieces in the floor - so far unsuccessful but that hasn't stopped him from trying. He took the dresser I had in his room completely apart and by that I mean, pulled the WOOD apart at the corners where it was nailed together, you know, just pulled the nails right out. He's in the process of doing this to his bed as well. If you don't want something taken apart, don't leave it lying around where he can get it (*coughZACHcough*)

20. He is very connected to people in his life. He is. Don't think that because he doesn't interact with you that he doesn't care or hasn't noticed you. He does, and has. A perfect example: my mom was just here visiting for about 5 days. Josh just kind of went about his business, even though he asks for my mom on a regular basis when she's not here. But my goodness, she took something out to the garage one night and he started yelling "GRANDMA!" because he thought she'd left. He was distressed. When she wasn't in the car one afternoon when I picked him up from school, she was the first thing he asked for. And when we were at the grocery store, she went to do something on her own and he became upset and literally took off after her. His behavior is not conventional. But he has a tremendous capacity for love and connection, he really does. Believe that.

 

We do our best here on the Planet to make your stay enjoyable. If there's anything else we can help you with while you're here, yelling loudly will probably get you what you need. Or kicked out. But probably the first one. ;)