Susan's Blog

Friday, May 22, 2009

Pillow Talk

I awoke with pillow fluff stuck to my pajamas. This sounds like a joke but it is really not. I guess that what happened was that I unwittingly washed these sheets with a pillowcase that had a destroyed pillow in it. In our house, many pillows are torn and restuffed and shedding, and in general disrepair, because Nat still is in the habit of using them for sexual relief. Ironic that he calls it “making privacy,” but here I am making privacy public. I am sorry to be talking about it. I am sorry, Nat.

I have to talk about it, though, because it is really worrying me, because the issue has, at last, surfaced in Nat’s group home.

I am full of this bubbling bad feeling in my throat and I don’t know what is going to happen about this problem. I think that at the moment the staff are stymied. I was told last night that they would now “keep more of a direct watch” or something like that, on Nat at night (this happened overnight). It scares me so much because I do not know how else they could possibly address this problem. We have tried for years to get Nat not to take care of himself with other people’s pillows. We have used charts that explained what he could and could not do at home. We have given him lots and lots of his own pillows. We have told him verbally the rules. We have spoken very very firmly about the rules, once they are broken. Nat’s brothers have had locks on their doors for some time. I don’t, and last weekend when Nat was home I found that my pillow had been torn apart and then stuffed back into its casing all lumpy. So now I have to lock my door? But I know what will happen eventually: he will use the living room throw pillows. That has happened, too. Or the porch cushions.

How will the house staff address this? It was difficult enough bringing it up at the team meeting on Monday. In fact, I wasn’t going to, because it had not ever happened at The House. But our school liaison, who is sharp as a tack and soon to retire, brought it up and suggested something she’d observed in another school. But this approach would not have worked for Nat. It involved restricting his privacy sessions, whereby he had to budget his time wisely. I feel that any kind of restriction is inhumane, but I realize that his method will have to be restricted.

In general, because of his vulnerability, and because I have always had to trust others with him, I have always feared Nat being abused and not being able to express his distress, or not even knowing that it was abuse, etc. etc. So now that this is a problem in The House, even though I trust them and respect them so much there, I worry that somehow this problem will either not go away, or will somehow become a worse problem.

Again, I apologize to Nat for speaking of this publicly, but we have to figure this one out and solve it. It is for his own good.

So… since I don’t want to dread Nat being home this weekend, because of this return of difficult behavior… I am going to be proactive. I have set up a velcro list of Nat’s choices for while he’s hanging out here. I am not telling him what to choose, just giving him the boundaries.

These are backwards, of course, but you can see what I did. (I guess you’ll have to hold it up to a mirror to see the choices. But you get the gist of it. One of those choices is “Make privacy with Nat’s pillow with the door closed.”
He already choose “sit on couch and walk around for 30 minutes… naturally!


Just want to say how well you’re handling this. I’m in unknown territory now, heck the baby teeth are just coming out, but when the time of ‘privacy’ comes I’m pretty darn clueless. We’re each to handle it in a different way. You’re doing the best you can and I appreciate you sharing this with us.

— added by Someone Said on Friday, May 22, 2009 at 1:50 pm

I don’t know much about boy’s toys but would it be possible to buy Nat an appropriate toy to be used for this sort of activity? Is the home he lives in amenable to the idea that people have needs, and would they allow him to keep in his room something that he could use?

I mean, if it were me, pillows would be a poor substitute for something designed for that activity.

Everyone should have the right to “make privacy”, the only problem here I guess is using other people’s belongings to do so.

— added by Shannon on Friday, May 22, 2009 at 3:32 pm

Shannon, the thing is, I wouldn’t want him to have an inflatable doll or something because right now he doesn’t associate this act with women (or people of any sort) and that’s a blessing, however sad it is. Imagine the trouble I’d have then!

I think pillows are fine; you can’t change a person’s sexual preferences.

— added by Susan Senator on Friday, May 22, 2009 at 3:52 pm

thanks for sharing this Sue, I know it’s difficult and it’s something I’ve never thought about. You realize of course that you are obligated to be my friend for life because it’s likely I’ll be desperately seeking your advice on this matter 10 years from now.

— added by eileen on Friday, May 22, 2009 at 6:23 pm

Eileen – I will be your friend for life because I want you to take me motorcycling with you.

— added by Susan Senator on Friday, May 22, 2009 at 6:44 pm

ha! seriously, you have an open invite…we need to start thinking of a good biker name for you!

— added by eileen on Friday, May 22, 2009 at 7:24 pm

ooh! give me some ideas??

— added by Susan Senator on Friday, May 22, 2009 at 8:13 pm

You could get some fabric pens and label a pillowcase with big letters like “Nat’s Privacy Pillow”, changing out the pillow inside as needed. Make up additional pillowcases for the group home that look the same. Something to help him understand that this pillow has a special purpose. Add in some fun designs maybe. Anything to make it preferable to nabbing somebody else’s. Iron on’s, embroidery, maybe Nat could help design it.

— added by gail on Friday, May 22, 2009 at 11:57 pm

Has Nat finished physical growth and development? If yes, look seriously into Lupron.
Lupron got a bad name in autism circles because it was tried as a quack “autism cure”, and used on young children which messed up their development. But it has some medical uses in adults; it decreases testosterone, and thus lowers libido and aggressive behavior.
It’s a very useful adjunct to a plan that is based on behavior management.

— added by Anonymous on Saturday, May 23, 2009 at 10:20 am

It has to be hard to come up with a way to deal with this. We aren’t quite at that point yet and I’m sure in a year or two I’ll be wondering what to do myself.

— added by cameramom on Saturday, May 23, 2009 at 2:49 pm

Wow. I was slack jawed and stunned when I read about this in your book, and I have the same reaction here. Not in a bad way. In an I-am-in-awe-of-how-well-she-handles-this-’cause-I-would-surely-freak-out kind of way. I have no advice, no suggestions, as my kids still consider their penises mere bath toys. I commend you for being able to handle this with such grace, tact, and respect. I hope and pray I am able to do the same for my sons when (if) “making privacy” becomes an issue in our home. You are truly my autism mom idol, Susan. I respect the hell out of you.

— added by ASDmomNC on Saturday, May 23, 2009 at 3:09 pm

And by the way, so much for my list of choices for Nat. He looks at the whole list and grins, and chooses nothing! Right now he’s on a walk with Ned.

ASD Mom NC, you are very cute and there is no “if.” It will happen, but perhaps you will have some advice for me at that point.

— added by Susan Senator on Saturday, May 23, 2009 at 3:16 pm

Also, Anonmyous, thank you for trying to help, but the thing is, I would feel that it would be inhumane to alter Nat’s libido. He has full rights to that. He just has to learn the boundaries, and I am going to get him there, by jingo!

— added by Susan Senator on Saturday, May 23, 2009 at 3:18 pm

Yeah, I know they’ll do it, but my fear is it becoming a problem of exhibition (or stealing pillows…) or whatever. We had an appraiser at the house the other day, and my autie just walked into the bathroom while the man was measuring it and dropped trou. Sigh. My sister reassures me constantly that little boys have an inherent love of nudity, so right now I’m just taking her word for it and holding my breath that I’ll have the grace to deal, come what may.

— added by ASDmomNC on Saturday, May 23, 2009 at 5:31 pm

I had to come back to read your response, Susan, because I couldn't stop thinking about this – not in a sick way – just thinking about whether or not human sexuality is a human right. I can totally see now why you'd want to keep him pillow-focused since it's much easier to handle than real people relations.

Though this led me to another thought, do autistic folks ever fall in love, romantic love with another person? I know aspies do because I know an aspie that got married & had kids.

Love Gail's idea…how cute.

— added by Shannon on Tuesday, May 26, 2009 at 12:35 pm

I am sure autistics fall in love, just like everyone does. I am not sure some of them know exactly what it is they are feeling, but who am I to say? It may be kind of a different focus than say mine or yours. But I’m certain that all of the human emotions are there, just not always being expressed in a neurotypical manner.

I think Gail has a creative idea,and I so appreciate everyone’s kind and enthusiastic thoughts about this, but I doubt it would work for Nat because I am pretty sure he knows which pillow is his; I think it is more about how he likes other people’s. He really wants to use other pillows; maybe it’s about scent, maybe it’s about mischief and attention, maybe it is something altogether different.

— added by Susan Senator on Tuesday, May 26, 2009 at 1:04 pm

Male sex toys don’t have to look like women, or like men for that matter. You can get him something small and portable at an adult store that is made expressly for “making privacy” and which can be washed and reused, Maybe Nat uses a pillow because that’s what’s available around the house that appeals to him. I’m not suggesting you take him shopping with you but there are online catalogues or you could just choose a couple of different models and present them to him with instructions about using them behind closed doors and cleaning up afterwards.

— added by Palmer on Wednesday, April 21, 2010 at 4:20 pm

Interesting idea. I’m just convinced he likes pillows. He checks out the new ones. I don’t know, I’ll think about it.

— added by Susan Senator on Wednesday, April 21, 2010 at 4:21 pm