Thinking of you and your family.

I'm wondering if there is a sensory component to this, particularly when you talk about her "burrowing into" you. Has she been evaluated for sensory issues? Maybe that would be a different way to approach the situation. Hugs. That sounds hard.

One more important thing that occurred to me: As hard as it can be, I try to get away from the house with just dd1 and give her some undivided attention as often as possible.

Okay, I'll try. First, I'm right where you are. One very intense, often difficult child with multiple diagnoses, and a suffering sibling. I do not for one moment believe I'm doing enough to support the sibling, nor am I sure it's possible to really do enough. We are all very clear on the fact that life is not fair. What I am doing: 1. Counseling for dd1, with her own therapist she does not share with her sister. This therapist's job is simply to support dd1. 2. School for dd1. Sadly, we reached the point at which we could see she needed not to be homeschooled. Her sister simply sucked all the air out of our days, and I couldn't give her the attention or the atmosphere she needed. She is better off at a good school, though it about killed me to reach that conclusion. 3. All the outside activities I can manage, to give her a life outside our fraught household. It has not always been possible to let her do all the activities she wants, because many require parent volunteer efforts or time commitments that we just can't manage. But I have tried to get her out of the house as much as possible. 4. Inside the house, her room needs to be her sanctuary. We've made sure she has a lock, and we try to let her have things that help make it feel safe: a white noise app on her tablet, her music, calming CDs, comfy bedding. 5. A chance to learn about her sister's conditions by participating in her therapy sessions. Some of the advice dd2's therapists have given dd1 has been very helpful. 6. What I'd like to do, but haven't been able to manage, is find a support group for siblings. There isn't one at the moment, and I don't seem to have the energy to start it. :-( I hope that helps a bit, and I'll be listening in for other ideas. I do know how hard it is.

Thoughts for you to consider, not necessarily answer here: how is she doing apart from academics? Is she happy and is she comfortable at the current school? Even though she is gifted, is there any possibility of executive function issues? Does she really, herself, want to go to the magnet school? Is there any chance she thinks you want her to go there, but deep down she doesn't? Have you asked her what the problem is, in a calm way, not critically? Is she satisfied with what she's doing? What are her own goals? Thirteen is a rough age, and what you're describing may be much less than what she's capable of, but it isn't abysmal. The lying sounds most troubling, but I can remember doing all these things at a time when I was miserable in school. It wasn't about lying to my parents, it was about sheer misery.

Speaking carefully here, and gently... Autism is a complex neurological condition which varies widely in its expression, as I'm sure you know. People with autism vary widely. Has your husband actually received a diagnosis of aspergers/autism? If so, you've probably talked with professionals about how to effectively interact with him. Not all people on the spectrum are the same, and no one approach is going to apply. Based on my limited experience with one dd on the spectrum, I would say if I "overreact," there will be problems. At the moment I'd back off, give him time to cool down, and later try to discuss things calmly. But... It just isn't as simple as you imply with "how do I smooth things down with someone on the spectrum?" First, he's himself. Not my dd, not that person's son, even if they are also on the spectrum. If it were that simple, if it were a formula to follow, all our lives would be much easier.

Thanks, I'll check into it!

And, she actually has a lot of independence. I don't want to give the impression that she's restricted to the house or anything. Giving her the tools to manage her world herself has always been the best technique for her. It's just how to reconcile that freedom with her less cooperative moments that's giving me pause. ;-)

So how has calling the police worked? Have they understood the situation, been able to walk that line of enforcing boundaries without frightening him or causing resentment? Do they mind getting called for that sort of thing? What exactly do they do, just talk to him or bring him home? Calling them *is* what our ABA providers have recommended. She's too big for me to physically be able to stop her, and she's very reluctant to let me establish boundaries. But I've been concerned about giving her a negative impression of the police, and reluctant to identify dd to them as a potential problem.

Yes, that's why she can't have the mist. For those of you who have used the Angel Tracker, are your kids cooperative? Do they understand what it's for? The trouble for us is the "splinter skills" nature of HFA. Dd is not going to agree she needs to be tracked, and is fully capable of removing whatever I put on/in her clothing. She doesn't need to be under someone's watch at every moment. But she reacts in the heat of the moment without thinking if she gets upset, and she's increasingly wanting to react by wandering the neighborhood. I don't know, I may be overreacting to the flu shot incident myself. A tracker may be overkill. But having her bolt like that, and then hide so long while I was looking for her, really frightened me.

She won't grow out of ASD, no. I guess I'm just hoping for a gradual, incremental maturation and greater ability to make good choices, even if it's on a different schedule. We are working very hard and very intentionally on a wide range of skills, like identifying when you move into the yellow zone, asking for a break, asking for help, choosing good ways to relieve frustration. We're redoing her bedroom to include a lot of sensory stuff, like a hammock and a place to hide out and relax. Over time, I hope all of this will start to come together and we will be able to give her all the independence she wants. It's just that while she's eleven, storming out of the house upset over something, valid or not, she still needs some monitoring and protection. Thanks for all the ideas, folks. I'm going to go look up Brenda Smith Myles, and try to figure out the various sorts of monitors.

Julie Smith, that jewelry looks neat. I'll investigate that, thanks. OhElizabeth, letting her skip the flu shot was my plan last year, but the ped really pushed it. Thing is, she's had respiratory issues in the past, and dh has much more significant problems if he gets a respiratory bug. And the ped said, kids do die of the flu. Not that it's common, but it happens, and with our family's issues we need to keep the bugs out of the house if possible. Anyway, last year she was already at the office for other things, and the shot was an add-on. This year she knows it's coming. They won't give her the mist. And even if we skip this shot, there are others she will need. We have to sort out the issue, but I think that will happen slowly and with lots of talking. AFA the kindle, I'm not sure what she did. I tried to do the Freetime (???) controls, like only so much time for apps, unlimited reading, all off by 9pm, but she got around it. She's no computer whiz, but she put her own password on the thing and locked me out. I haven't really tried to sort it out yet, just took it away. You know, her big overarching issue is control. That ties in to the bolting, the kindle, the shots. She wants complete, adult-level self control, but she isn't ready for it yet. If she has enough money, she thinks she should be able to buy all the candy she can afford and eat it on her own (short) schedule, because it is *hers*. Her vision of it is black and white, unsurprisingly I guess. We do talk a lot about it all. Is this emphasis on control typical for aspie types, does anyone know? And her anxiety is another big issue, and that also ties in to the bolting. I'm really counting on the ASD being a developmental *delay*, and hoping at some point the understanding and judgement do kick in. But that's probably years away, and in the meantime we've just got to keep her safe.

That's a really good thought, Lecka, about tying internet to a space like her room. I'll need to think that through. Really at the moment I'm just keeping her off until I can find a way to monitor what she's doing. She's defeated the parent controls on her kindle, so she's lost it for now. Whether she's bolting or not, she's moving around the neighborhood enough that I need to monitor her and have a way to get in touch. We'll probably get her a phone of some sort for Christmas. It would be nice if I could figure out a way to make that work for tracking too. Middle school does get complicated.

It's really tricky. She can go to her room, and we're in the middle of getting her set up with a bunch of good sensory/OT stuff in there. We have also encouraged her to take her dog for walks when she needs a break. Usually, that has been a good thing. The bolting incident is a new wrinkle. She bolted because she was supposed to get a flu shot. She *wanted* to hide from us and not be found. (She still hasn't had the shot, and gets upset at trial runs by the office, but that's beside the present point.) If she knew whatever she was a tracking device, she wouldn't carry it: it's not a sensory issue, it's a control issue. So it needs to be something she loves and carries because she wants to have it, which sounds like a phone to me. She'd be overjoyed to get a smart phone and pleased with anything that lets her text. But she's made some bad internet choices. The Verizon guy said tracking her with a dumb phone was not possible. Does that sound right? My limited understanding of it all suggests a dumb phone might be able to identify which cell tower she's closest to, but not that she's hiding in the woods near the playground, for example. Or is it possible to turn off the internet connection part on a smart phone and have the gps still work?

It is hard, no matter when you find out, but try to relax and breath. You're figuring things out very early, and that gives you a great opportunity for starting therapy and making a real difference. Know that you are already doing a great job. Hugs.

Dp

So, my 11yo dd with HFA bolted when she was upset. She spent more than an hour hiding in the neighborhood while I was searching frantically. She hasn't done anything quite like this before, but I'm afraid she will again. She wants more independence and wants to move around the neighborhood on her own. She is very impatient and intolerant of adult efforts to "control" her. She does know the neighborhood well, but her judgement can be poor. I need a tracking device, and it needs to be something she will chose to use for her own purposes: I.e., maybe texting capability? Maybe music? She will not tolerate something I attach to clothing. I would rather not give her a smart phone, or if that's the best thing to use, I would rather be able to disable the internet connection, as she has not been good at making wise choices about internet use. Ideas?

Well... Guess I need to follow up here. Suffice to say it was not a good day, and I think we're going to be talking to the nurses about a plan to desensitize dd for the future. On the bright side, the BCBA now has a firm grasp of our challenges. And now, on to some Advil, some chocolate and some really escapist reading!

Hmmm. You're thinking a treat after a bad appointment will reward the behavior? That makes sense. The BCBA was with me when we came up with the idea, but she may not have realized how bad it was likely to be. I can't talk about this stuff in front of dd or it causes a bad reaction. Technically, the treat afterwards was supposed to be a reward for doing other stuff last night. It's an activity dd has been looking forward to which couldn't be scheduled at an earlier time. It just fit into the schedule after the appointment today, and I figured it would give dd something else to think about-- ABA, (shot), ACTVITY! We've already had a big meltdown today. Maybe I can find something for a distraction in the office, but I don't want to reward the bad stuff. What a day. Thanks for the ideas, I appreciate the support and sounding board.

How awful, I'm so sorry! I would be talking to someone there later, after sorting out her immediate care.

Are shots a problem for your kids? Any tips on how to get through the ordeal? Dd can't have the mist because of respiratory issues. Last year was, I'll just say, difficult. She knows she's got to get the vaccination and is holding out hope that this year she can get the mist, and I've told her it is up to the doctor which she receives. If she knew it was certain to be a shot, she'd never consent to go. We have arranged to have ABA immediately before time to leave, so we'll walk out of the house with the BCBA. We have arranged a treat for immediately after the appointment. The office has been warned. Anything else we can do to make this better?

Regarding Ritalin: we tried it, and I think it did help, but I didn't continue giving it to dd because I was just too uneasy about the overall number of medications she's taking. That one seemed helpful but less essential than the others. I might change my mind about the cost/benefit analysis there at some point. I need to really study those top ten strategies. The problem we run into is one of timing, which Lecka describes very clearly, and compliance. It's so hard to keep dd's cooperation. Ultimately she is willing to go to much greater extremes of behavior to gain what she wants than I am to gain what I want. So, if she's in the yellow zone, and I suggest an activity to refocus or calm down, she is likely to refuse that and either shut down or defiantly go for a more preferred activity (in Lecka's example, the video game). So maybe I was wrong and she was really already in the red zone, even though she was just sitting quietly at the table? Or sometimes the mention of zones seems to get her upset. I think I need to do more conscious monitoring of zones all day long, and make sure I don't just associate them with bad behavior and turn them into a trigger. All this needs to be very conscious and purposeful and carefully implemented, and I've got enough ADHD tendencies myself that I find it really hard. I appreciate the chance to "listen in" as others are thinking it through.

Lecka, the "spoons" analogy bit describes what happens here a lot perfectly. It's usually not one big thing causing stress, it's a lot of little things that add up.

October. Or right now. If you go in the spring, prepare to be either in a small group which gets added to a school group going through a building or in a group squeezed into a time slot in between two school groups. BTDT. The interpreters do the best they can, but the school group numbers are overwhelming.

Our local paper usually runs a few articles about the candidates in the weeks before the election. I find that helpful in cases where I don't already know their records. It's a good reason to continue to subscribe, even though I get most news from other sources. They also cover local politics and civic affairs throughout the year. We always vote.