Saturday, May 14, 2016

He's not a 'safety hazard,' he's MY SON.

Mostly people are okay with the boys, and especially Mr F, who can present challenges to those who want to be okay with him. He's tough, at times: he can be loud, and he can be hard to control, and he can be mercurial (sometimes we say he's every emotion because he will laugh like crazy and then suddenly start bawling his eyes out.)  But mostly people are okay with him.

That makes it so much harder when discrimination and ignorance show up and pick on him.

We took Mr F and Mr Bunches to "Dolphin Pool" today. This is one of Mr F's favorite things: it's an indoor zero-depth wading pool that he loves to go to.  He sits in the hot tub, then he wades around. He will float, and roll on his back, and lately he has been going to the slide and walking up 2 or 3 steps before chickening out and going back down. I know he's going to make it up that slide one of these days.

"Dolphin Pool" is at a place called "Prairie Athletic Club." It's a health club on the other side of town that we get to go to because it's joined with the one we belong to in our neighborhood.  We have been taking the boys to Dolphin Pool (so named because there is a statue of a dolphin on the edge of the pool) for 8 years now -- since they could first walk. We have been members of the club for eighteen years. Because I can't work out without dying, almost literally, the only reason the boys and I are still members is to use their pools, because swimming is Mr F's and Mr Bunches' favorite thing in the world to do.

Mr F stands out at the pool. He has to wear a wetsuit, because a few years back he would get bothered by how his swimming trunks felt, and take them off. So we bought a wetsuit for him to wear, because we can't have him taking off his trunks but we want him to swim. Do you know how much wetsuits cost? About $90.  He's on his second one, because he's growing. We pay about $25 a month for the pool access, and have to buy a wetsuit. But swimming is important to Mr F. It calms him down and helps him relax, and he gets to be free.

Mr F is almost never free.  Everywhere he goes, he's belted in (we have a special safety harness for use on the bus and in our car), or has his hand held.  Nearly always. The only times Mr F gets to be free is when we're at a playground or a nature trail far away from roads or water. Then he can walk without someone holding him and not be buckled in on a 5-point harness like he's Evel Knievel, just for a trip to the library.  This is because Mr F has little to no impulse control. He will dart away from you at a moment's notice. He also has absolutely no sense of safety. He either does not know, or does not care, for example, that cars will kill him. So if there's any chance he will get into danger, or trouble, he's under what I call "hand arrest."

Swimming, he is free. We don't hold him. He gets to swim and duck under and jump and splash and roll around, and if you could see him! He gets this faraway look in his eyes and a smile on his face and he laughs. It's making me smile as I write this.

This all means, though, that Mr F sticks out like a sore thumb in a pool. He's the only kid with a wetsuit, the only one jumping and laughing and rolling around.  Even for kids in a pool, Mr F is a sight, the way he plays.

And he's the only one carrying 'tappers.'

I've mentioned 'tappers' before, I think. Mr F is always carrying something with him to tap. It used to be spatulas (we still have a drawerful of them). Then it was plastic coat hangers. For a while it was wooden spoons (we still haven't found the ones we used to have).  Right now, it is forks, but a very special set of forks.

Mr F picks out his forks the way a surgeon might pick out his scalpel. If they get mixed up or (God forbid!) he loses one, the selection process for a new fork is a strenuous one. He will take 2 or 3 forks and hold them up, tap them experimentally on his chin or his hand, and then shift them in position, move them a bit, try a different combination, and so on.  This takes about 15 or 20 minutes, at least, so we are very careful to keep his latest combination separate from the other forks, to spare him the trouble of having to do it again.  (You can see how troubled he is when he can't make a combination that works for him. He gets sad and upset, hitting his head and crying. Since we don't know what a 'good' combination is, all we can do is suggest other forks or try to keep him from cracking his head on the floor.)

Mr F's absolute most favorite forks are these cheap plastic silvery ones from the Dollar Store. He loves these so much that the other day, when we wanted to get a surprise for each of the boys, we got Mr Bunches an "Imaginext Batmobile," ($24.99) and Mr F two sets of silver picnic forks. ($2). Mr F liked his present more.

He holds these forks like this:

Always. That is always how he holds his forks. Then, once he has them set, he taps them lightly on his chin, or on his hand. Over and over and over.

I have a theory about why this is.  With autism, everything is a theory. Nobody knows anything, really, about autism. Half the time we don't know anything about people like us: people who are able to communicate in abstract ways and explain concepts that are barely conceivable. We are so smart and yet we can't explain ourselves. Mr F is harder, since he can't tell us anything about what he's thinking.

My theory is this: Mr F needs the tappers to help him focus. Some people need something extra to help them focus in.  I like to have background noise when I'm working: television works best, so many times when I'm writing a brief or working on research I will have Archer or something on in the background. I'm not listening to it, not really: it's white noise that helps me focus on what I'm doing, paradoxically. Without it the silence seems to crowd in on me, and I can hear my own pulse, it seems like, and I become aware of how my elbow itches and that my head hurts a little and my knee is bent too far... and I can't work. With some background noise, I'm fine.

Mr F is the opposite.  Some scientists have theorized that one reason autistic people like the same routines and eat the same foods all the time is to cut down on the stimuli they experience; people think now that autistic people cannot sort out and ignore sensations, that every sound, texture, scent, sight, and taste are noticed and cataloged and experienced, every time.

If you are reading this while sitting at your table drinking a cup of coffee, say, you are experiencing lots of sensations that your mind just categorizes away: sunlight over here, the chair creaking, the way the table feels under your skin, the mug's warmth: you don't notice those until they are really new.  But autistic people, they think, notice everything all the time, and because of that they try to cut down on all the static. Mr F and Mr Bunches eat a narrow range of foods, because they can't stand all the newness of different flavors. Mr Bunches, for example, can tell the difference between "Crunch Berries" and the generic version of Crunch Berries. He can tell the difference between Crunch Berries that come in the box with Cap'n Crunch, and the Crunch Berries that come in the box of "Oops All Berries."

These are differences the boys cannot ignore. You or I probably wouldn't notice that slight difference, but they do, and they notice it every time. So they reduce the changes in their life to a minimum. They like routine, they like processed foods that taste the same every time, they will happily watch the same movie fifteen times in a row because that's the point it's the same movie.

Mr Bunches, like me, can exist in a world where a lot is going on: music, movies, games, people talking, and through it all he and I can focus on what we're doing. Mr F can't, though. He needs to cut down on the stimulation. He will bury his head in a blanket or under a cushion.  He went through a phase where pictures on the wall bothered him -- so we have almost no pictures on the wall-- because there were so many different ones. He doesn't like to change blankets. He only wears a few kinds of clothes.

Even then, it's hard for him. That's why, we think, he sometimes loses it and starts crying and screaming. When he gets that bad, we cut down the interference even more: I take him for a ride in my car, which is a two-seater and small and he can feel the vibrations. He sits in his blanket and taps his forks and we listen to audiobooks and we drive the same route, almost every time, to help him calm down.

The forks, then, help him focus. That's my theory, anyway: by tapping them on his hand, or his chin, it helps him ignore all the stuff going on around him by focusing on this one little thing, these forks tapping against his chin. It's like biting on the heel of your thumb to help take your mind off the pain of your stubbed toe: if you give your mind something to focus on, it can help ignore things that are harder to take.

So you can imagine that he needs these forks at the pool. At the pool, there's the water and the noise and the kids running around and splashing and balls flying past his head and the hot tub starting up and people bringing pizzas to their tables and towels and a whole lot, and you can watch Mr F sometimes retreat from that by going over to the hot tub and wedging himself into a corner and closing his eyes, tapping his forks against his chin quietly.

Mr F has used forks as tappers almost exclusively for about 3 years now. He has brought them everywhere with him, including to Dolphin Pool, including last week when we went.

So I didn't think anything of it today when we went in and Mr Bunches went to the deep lap pool to jump in while Sweetie watched him, and I went over to the shallow pool to keep an eye on Mr F.  I do this by hovering about 10-20' away from him: close enough that I can intervene if something happens, far enough that he doesn't feel crowded. If I get closer than 5-10', he keeps edging away from me because he doesn't like people too near him.

The pool wasn't especially crowded today. There were about 10 people in it, maybe? Or less. A few little kids, most of them over in the bigger, big-kids, pool; and some parents sitting around the edges looking at their phones.

Mr F had been swimming for about 20 minutes or so, and I was hanging out in the hot tub, when I saw a lifeguard come over by Mr F.  Mr F was at that point standing at the bottom of the stairs to the slide, looking up them like he wanted really this time to go down the slide, and the lifeguard tapped him on the shoulder.  I started over there, and Mr F walked a few steps from the lifeguard without looking at him.  I wondered if the guard thought he was blocking the stairs or something. As I got there, the guard tapped Mr F on the shoulder again, and when Mr F walked away again, the guard looked across the room, rolled his eyes, and shrugged at someone, like what's up with this?

It SHOULD HAVE been obvious to anyone that whatever was up with Mr F, he wasn't a regular kid. Regular kids don't wear wetsuits to wading pools and carry forks around. Regular kids don't walk around making a bunch of nonsense noises.

Anyway, I was at the lifeguard and I said "Did you need something? I'm his dad."

The lifeguard said: "He's carrying forks and he shouldn't. It's a safety hazard."

I said, patiently: "He's autistic. He carries those forks because they help him focus. He doesn't hurt anyone."

The kid said "He shouldn't have them."

There were only a few kids in the pool. I said "Would it be okay if he kept them and I sat closer to him so nobody has to worry?"

The kid shrugged and walked away. I moved closer to Mr F and hung by him as he swam around, oblivious to what had just happened.

About 10 minutes later, I noticed a group of 3, maybe 4, people over on the other side of the pool.  They were all wearing lifeguard clothes or club uniforms. One was the lifeguard I'd talked to. One was one of the women from the front desk.  They were talking and looking over at me and Mr F, and pointing at him.  Pointing at him repeatedly. And it was clear they were pointing at him because he and I were the only people in the direction they were pointing.  They left about the time I thought they saw me looking at them. I can't be sure they left because of that, but they did.

I wasn't happy about this, but Mr F still had no idea what was going on, and we'd only been there about 30 minutes. I like to let him swim for an hour or so.

By this time, the pool was really pretty empty. There were two girls, about 5 or 6, sitting on the hot tub stairs. (I WILL NOTE that sitting on the hot tub stairs, and being under 12 and unsupervised in the hot tub, is in fact IN VIOLATION OF A RULE POSTED RIGHT THERE, but it did not appear these two girls had drawn the attention of the crowd of whispery pointers.) There were a few other kids over near the basketball hoops on the other side of the pool. Mr F was alone in the wading area of the pool.

I sat by him for a bit longer, and then he wanted to go in the hot tub.  After making our way PAST THE GIRLS, ON THE STAIRS, we sat in the tub, Mr F in the middle section, me on the right.

After a few minutes, I noticed a guy walking by us, and looking at the hot tub.  I noticed him because he'd walked past a few minutes before and had looked at us. Now he was doing it again. After about 2 or 3 more passes, he came and crouched by me in the hot tub. By then I was angry, because I didn't know who he was but I thought the crowd of club employees pointing at Mr F had drawn attention to him, and I didn't want some rando walking by eyeballing my son.

"Is that your son?" Rando said.

"Yes," I answered.

He was clothed. I was in a hot tub, in bathing trunks. He was crouching just over my shoulder, behind and to the right, and above me.

"I understand he's autistic, but he shouldn't have those forks," Rando said. He must have seen something bewildered in my face because he added "I'm Andy, one of the owners of the club."

So I said to this clothed man who loomed above me "He is autistic. He uses them to help him ignore all the stuff going on. He doesn't do anything with them. He just taps them."

"Does he have something else he could use here?" Rando Andy said.

"No," I said, trying to convey that we hadn't anticipated having to have multiple sets of tappers because he'd been bringing them here for about 3 years nearly every week without incident.

I also want to point out that this club is pretty fancy. In addition to 3 indoor pools it has a restaurant, and many people will bring their kids there around dinner and order pizza, which is brought into the pool by restaurant staff to eat poolside.

They bring it with forks and knives.  Kids use those forks and knives.

Anyway, Rando Andy said "Would you mind taking them away from him? It's a safety hazard."

So many things ran through my mind but where I settled was: I am in a bathing suit. He is the owner of the club. I do not want to get us kicked out and have the boys not be able to swim anymore. The owner of the club is looming over me as I sit in a pool of water and asking me would I mind doing what he's telling me to do."

So I said to Mr F: Let me have your tappers, buddy.  He started crying and tried to take them from me, but I gently held his hand and took them.  He got upset and punched himself in the forehead. Rando Andy stood up.  Thanks he said and walked away.  I sat there, angry and wanting to get up and leave, but Mr F was still in the hot tub. He was upset, and looked sad, and tried to get his forks from me, and began trying to bite his wetsuit collar.

A few minutes later, as it turned out, Sweetie and Mr Bunches came over. Mr Bunches was tired and wanted to go and could we leave early? I said yes, and then on the way out told Sweetie what had happened. She was going to go storming off and yell at him right then. I told her to wait until we got there.

So we changed, and I gave Mr F the forks back, and we went out to the lobby where Sweetie demanded to see the manager, Rando Andy.  He came out, and tried to get us to go into an office. I said quietly Right here is fine.

Then Sweetie lit into him. Without raising her voice but pitching it in that tone that tells you she would like to gut you like a fish, Sweetie denounced the manager for letting some parent goad him into making us take away Mr F's tappers.  When Rando Andy said nobody complained Sweetie said that was a bunch of crap and someone must have because we'd been coming here for years and he'd been bringing his forks all that time and nobody had said anything.  Rando Andy then pointed at me and said I asked him if he'd get the forks and he didn't seem to mind.

I said I was sitting in a hot tub with my son being told to by the owner of the club. I didn't want to make a scene.

Sweetie then denounced the ignorance and discrimination that would allow a little boy to be approached twice by a lifeguard who appeared completely uncognizant of the fact that this little boy in a wetsuit making strange noises was a special-needs kid, let alone have that little boy pointed at by a group of staffers -- Rando Andy tried to protest and say that didn't happen and I said it did, I was there -- and said that if their workers didn't know how to deal with special needs' kids they should get training. She pointed out that we'd been members for 18 years and had never caused a problem and said that she expected her sons not to be discriminated against when we came here in the future.

She started to leave. I told Rando Andy that if he wanted me or someone to come teach his staff about autism I'd be happy to do so.  We have several people who have ... he started and I said then I expect in the future my sons won't be singled out like this, and we left.

So now, one of Mr F's favorite things in the world, Dolphin Pool, has been tainted.  He will never know it, I hope. We're never sure how much he realizes about what's going on around him, so maybe he was completely unaware of all this today and just thinks I was being unfair when I took his tappers for a few minutes.

But we know it. We know that every time we walk in that door to take our boys swimming, it is likely to be a battleground -- or at least it will feel that way to us. We will be constantly nervous that Mr F or Mr Bunches will do or say something to attract attention from some other parent or staffer with no tolerance or understanding, and that the boys will again be the center of unwanted and unwarranted attention, that we will again have to make a scene to defend their right to exist on terms they can handle.

I'm not demanding special treatment. Mr F isn't carrying around weapons. He carries those forks everywhere. He is sleeping not five feet from me as I type this and the forks are in his hand. He takes them to the library, to the pool, in the car, sits with them as he watches television, everywhere. He has taken them to the pool at this club, and at the other health club. He has taken them to the Madison Community Pool. Not once has anyone said anything. He has never approached another little kid, never hurt anyone, never even dropped them in the way of anyone. If he does drop or set them down, Sweetie or I immediately pick them up.  Not because it's a hazard -- it's a FORK -- but because if he loses one he has to go through a whole psychological ordeal to get a new set.

We have a little boy who wants to carry around a couple of forks with him. This little boy cannot talk. He had brain surgery when he fell of a counter and still has a scar from that, and because of that he cannot go on bounce castles, trampolines, or many other things little kids love. He cannot eat most foods. Because he is so worried about things he likes to feel enclosed and so even though he has a very nice bed with an extra-soft mattress on it and Spongebob Blankets, he sleeps in a closet I've removed the door from because he wants walls on three sides of him. He has to be watched when he goes to the bathroom and can't have the door closed because of that head injury. He is strapped into his bus seat with a safety harness, and held by the hand 99% of his life.

He wants to carry a couple of forks with him, and swim. This makes him deliriously, insanely happy, one of the few things that does in a world where most of the things traumatize or confuse him.

He will still get to do those things, and if he is lucky he will never know that each time we walk through those doors, Sweetie and I will have to again bristle for a fight, be ready to defend him, be ready to shield him from ignorant looks and overbearing Randos who want to throw their weight around on behalf of some spoiled-brat soccer mom worried that the weird kid will do something to her own perfect kids.

Mr F has never hurt anyone in his life, and never would.

But lots of people try to hurt him.

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