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Innisfree
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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?

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Oh dear.  That's something I've been afraid about with my ds, but he's still small enough we can find him.  They do, of course, have actual bracelets and things you can put on them.  I'm not sure if you get those through the police or what.  It sounds like what you're wanting is an ipod, apple watch kind of device.  Gonna get technical here.  When the devices (kindle fire, ipad, iphone, whatever) have location services on, they are pinging.  So if the "find my phone" feature is working on the device, it IS PINGING.  And it will ping and connect to cell towers *even when in airplane mode*.  Does that make sense?

 

So then you have the question of internet access.  On my ds' kindle fire, I can use the parental controls to password lock turning on and off the wifi.  I'm thinking here.  His device is only wifi, no 3G/cell.  It *does* do location and find my device (I think?), but it only uses wifi to do that.  I think.  

 

So it sounds like I'm splitting hairs, but if you have a device that has a cell contract and does pinging, it may or may not have a data plan and it may or may not have parental controls to let you password lock access to the internet.  But I'm saying if she has that device and doesn't realize that nuance, then (assuming she has it on her person), EVEN IF SHE PUTS IT IN AIRPLANE MODE thinking she's locking you out, you can *still* find her.  That's assuming you have it registered with the product's find device service.

 

I'm in total denial, so don't ask me what device you should get.  If money grew on trees, I think the apple watch would be way cool for our kids.  All their alarms could go on it, they could record or text messages, AND you could find them.  I don't know what the apple watch can do without a phone nearby, like whether it actually does all those things if it's by itself, dunno.  My ds' kindle fire, even though it's portable, is not the kind of thing he would grab if he were bolting.  Seems to me like you're wanting something she always has in her pocket or a watch.  So it's more like what you want to pay, kwim?  If you get one of these prepaid phones from Walmart, do they have find my phone?  I really don't know.  

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I am so sorry.

 

I have heard of one called "angle tracker," but I googled that and there are apparently numerous copy-cats or similar ones!

 

I think the one I heard of might be angelsensor but I am really not sure.

 

Another thing you can do is call the police department about registering her and taking her to meet them.  You may not have heard of this ---- but there is a problem for some kids where they hide from police b/c they are scared of them.  

 

There is also an Autism Speaks "Big Red Safety Box" that I think I remember is talking about ideas like alarm systems, laminated stop signs, etc.

 

When my son had this issue he was younger and a big part of it was a lack of communication skills to express he wanted to leave a place.  But there were a lot of factors.  This was something where I needed help from a behavioral specialist to figure out *why* he was bolting, and then how to help to end it.  But, it took about two years to really get it to where he was not doing it anymore.  But a lot of his bolting was not the scary kind of bolting, it was the very predictable kind of bolting that I knew was coming and would just need to handle.  

 

If you google you can get a lot of ideas, though.  

 

Oh, and for saying she wn't tolderate it on her clothes ----- one option is shoes.  But the one I have heard about (again -- is it angle sensor?  I don't know) was saying it had some really unobtrusive way to go on clothes, but i don't quite remember it.  When I heard about it (it was sent in an e-mail of a parent group I am in) I was past that point, but I thought it looked pretty good.  

 

A lot of interventions for her might include that she has a safe space inside the home or school, and you try to teach her that if she goes there, she will be left alone for a while.  That is honestly one I hear about a lot.  Then how to teach to go to that place if it seems good --- oh, then there is the teaching process.  This can be called a "home base" strategy. if you want to search "home base autism" and see about how to set one up.  I you can't find a good line for that let me know, I can find one.  

 

I am so sorry, I hope it will not happen again.   

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https://www.angelsense.com/

 

This is the tracker I have heard of.  I don't know anyone who has used it personally.  

 

It is just one option, I am just sharing it since it is the one I have heard of.  

 

And, just mentioning again, I attend support groups, and for older children, I hear a lot of good things about creating a "home base."  But if there is a safety concern ---- if you can ask for help from a professional, I think that is really a good thing to do.

 

I was worried about my son being hit by cars and things like that, though, and your daughter sounds like she is older than that at least!

Edited by Lecka
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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?

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Oh, no, the stupid flu shot!  All you want is for her to not get the flu!  I hate things like that.  

 

My kids are younger and I have heard this discussed a little by more middle-school aged parents, but I have not paid a lot of attention.  I am still going "la la la la" about middle school.  

 

I do have this thought, though....... if she wants Internet, I might consider tying Internet to the safe space you want her to go to.  I don't know if that is better, but it is a thought I have.  If you think she wants to go somewhere to text or use the Internet, and you are thinking of giving it to her, I think I might try it in the home base, and try to go more in the home base direction.  

 

I know that doesn't help the bolting, but I think it would be, from my perspective with my son, not so effective to give him a preferred item for him to carry around and have freely available to him when he felt like bolting.  I would be going more for "oh, this awesome preferred item, let's pair it with *not bolting.*  

 

But I am just mentioning that -- I don't think it is a bad idea at all!  It sounds like there are a lot of pros.  

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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.

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I think the *police* could track the dumb phone.  It's just it won't have an app to make it easy for *you* to track.  Lecka's idea about talking to the police is right on.  There have been so many incidences in the news lately about kids with ASD being lost.  I think they really would care.  In our area they just seem to be very pro child-safety.  Like at the fair they bend over backwards to band kids, etc.  I would think they would have some advice for you.  And yes, I think the *police* can track that cell pinging on the dumb phone, even though you can't.  So it's really more like is that a problem, how long does that process take, is that intrusive if you call them and say she has bolted, sigh.  

 

Lecka's advice about having a space they can bolt *to* is good.  This is such an over the top situation (to the child) that I can see why she bolted in an over the top, extreme way, kwim?  It was more than she could handle or do anything about.  I remember doing a similar thing when I was, well I was right exactly the same age actually.  I was in 6th grade, so I would have been 11, and I left school because my gym clothes were gone (stolen, taken, poof).  I had no one on my team to help me, it was an over the top situation, and I poofed.  And my mother totally freaked out.  I think the school suspended me for three days.  (They were idiots.  It was a relief to me!)  I don't think I ever did that again, but I did leave home at 16.  

 

She's a spunky chicken.  You might want to set up some discussion process that gives her a way to talk or disagree or handle these over the top things.  To me, I'd just not do the vaccine.  They're controversial anyway.  Maybe her body is crying out no.  Maybe it doesn't matter.  Maybe she needs techniques to handle the anxiety of the shot if it's really that important. I think with a maturing child there has to be that discussion of how to handle the problem, not just how to get what you as the parent want (compliance).  Is it a life issue, how does she sort through those feelings, how do we decide, does she have control over her body, what can she do when she has these strong feelings, who can she talk with, how to handle that anxiety, these are fair game to work through, kwim?  Maybe you decide to work through the process and even give her the choice NOT to get the vaccine AFTER she has done some work on the anxiety and finding a counselor she talks with, kwim?  Life lesson, not just compliance, because the vaccine itself doesn't really matter.

Edited by OhElizabeth
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On your kindle parental controls, I'm confused.  She figured out your passcode?  She's a hacker and did some kind of jailbreak??

 

The kindle touch has a find my device feature.  I keep ds' off, but I'm pretty sure it has it.  

 

I would think a small device.  It's really such a shame the apple watch is so expensive, because it would be so perfect.

 

I've lost track here, but I wouldn't put internet in her room.  That's just my statement as a parent, my opinion.  But some safe places in the house, yes.  A counselor to talk with, yes.  

Edited by OhElizabeth
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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.

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I think they (psychs) do a real disservice when they describe as a delay (implying it will come in intact and complete, just later), something that is irreparably glitched and going to be different forever.  I'm sorry, I got the same crap line with my ds.  First psych said social delay, so like ok that means just subtract a year or two and he's appropriate and typical, right?  Not.  

 

Why no flu mist?  Sure sounds rigid.  Maybe time for a new ped who has a better understanding of how to handle spectrum.  He could get anything out of her probably if he bothered and had better technique.  We both know there are people who could convince you to eat grasshoppers and there are people you wouldn't do ANYTHING for.

 

An 11 yo has opinions.  The fact that she has ASD doesn't totally dismiss those.  She has preteen, prepubescent feelings of self-determination.  My ds with ASD is OFF THE CHARTS self-determinant.  You HAVE to have his cooperation to get anything on board.

 

You could do hand sanitizer instead.  You could do health education, like ok you're going to meet with a nurse and she'll explain germ theory and then we're going to do the bacteria kit from HST and THEN we'll meet and consider Daddy's perspective and yours and think through 4 options and choose.  And why are anxiety techniques for the shots not on the table?  CBT?  This is a lifelong question, and it doesn't go away just by waiting.  So it has to become how do we teach her the SKILLS to work through these problems.  The flu shot or not doesn't actually matter.  You could give her hand sanitizer and require her to use it.  You could require handwashing before anyone comes home.  Your dh could take more vitamin C.  I'm very careful about this stuff in our home because *I* get sick, so I understand how frustrating that is.  

 

You can't be top-down in your approach forever, just telling her what to do.  She's going to have to have some counseling for the anxiety, build a relationship to work through things she's overwhelmed by, work on having a more educational relationship with the doctor and his nurses so things aren't so top-down, etc.  There's a lot you could do there, and THEN she might come to the other side in a team way.  

Edited by OhElizabeth
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I don't have the exact same point of view when then is another person living in the home who could become very ill from the flu and people who have respiratory issues.  I don't think 11-yea-rolds get to choose to put health at risk in that way.

 

I agree with the overall sentiment, though!

 

I hope you can get a lot of ideas.  I think it will take a lot of ideas.  

 

This is not really my son's set of issues, to be honest, but I think if you could go to a parent support group, too, it might be helpful.

 

And, I saw Brenda Smith Myles this summer, and she seems to do a lot with HFA and maybe things like this.  Maybe you could get ideas from her books, too.  I know she is one who does the "home base" thing. 

 

I hope it will not happen again, though.  I wish I knew something more appropriate to recommend.  Let us know if you find some good strategies!

 

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Also, I have an adult cousin who I am close to and grew up very close to, who was diagnosed with Aspergers in his early 20s.  

 

I think you do the best you can, but you have got to look fro strategies as well as possible.  Strategies will have their limits sometimes ---- it is not like you can get to "everything is perfect' sometimes.  

 

But my aunt and uncle, when my cousin was younger, were told that my cousin would grow out of some things that he has not grown out of.  This is before there was anything known about HFA or Aspergers by mainstream people.  My cousin always had some things, but they were truly told that my cousin was immature and would grow out of things, that are not thiings hwre you can count on soembody growing out of it.  

 

At the same time ----- my cousin has absolutely matured!!!!!  He absolutely has grown and matured the same as any other person will grow and mature.

 

But, he still has Aspergers, too.  It is not llike he is frozen in time and never changes.  But, he also does not become somebody who just grows out of everything.

 

With that said ---- I don't actually know that much about HFA or Asptergers.  I hear some b/c I attend meetings and workshops, but my thoughts are focused more on a younger child and a different focus, etc.  

 

But -- not everything is going to be grown out of, maybe.  But what will be grown out of? What won't be?  Who konws.  It varies with every person!

 

But -- if you can look for strategies, that is at least something under your control to try and look for.  And, there is stuff out there to try.  I know the Brenda Smith Myles stuff seems good, the workshop I went to seemed good.

 

But I think, too, sometimes we are getting through the present and hoping for improvement!  And improvement does come ! But I think it is like -- two prongs, both needed.  The maturity/improvement side, and the strategies-for-the-meantime.  

 

It is just something that makes me upset b/c my aunt and uncle were truly told to just wait for things to get better, and that was not the best hing for them to be told.  Though it was the best info available at the time.

 

Separately ----- I have seen a visual strategy for Internet stuff if it is sharing inappropriate information.  You draw a bullseye and in the center is yourself, and you write what you could share/post.  Then the next ring, then the next ring.  You write in the rights what you can share with that group of people.  

 

I have seen it recommende that you fill out the paper for different situations.  Some things may be appropriate for same-age friends, but for grandparents.  Some things may not be appropriate outside of immediate family. Etc.  

 

I saw this at a parent meeting as an idea for kids who were positing "private"-type pictures on Facebook and things like that.  I don'w knot if it is very good or not.  A person said, though, that it is extremely diffiuclt to keep kids off the Internet b/c it is aviailable so often if they want to sneak on in some way.  Lots of kiids may sneak on in some place you aren't expecting it, and then the parents find out much later, that there child has been sneaking on the Internet.  So teh point was ----- try to teach these privacy skills b/c just trying to keep kids off the internet is a good thing, too, but ultimately you need them to understand the concepts.  So -- it is two prongs, trying to teach the concept, and int eh meantime, trying to monitor the usage.  

 

But I am going "la la la" b/c I have enough on my plate with my age of kids without borrowing trouble from the middle school ages.  

 

I think it sounds like you are doing so many things right!  It sounds like you are doing very well in a situation that is difficult in some ways.  

 

 

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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.

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Why no flu mist? Sure sounds rigid. Maybe time for a new ped who has a better understanding of how to handle spectrum. He could get anything out of her probably if he bothered and had better technique. We both know there are people who could convince you to eat grasshoppers and there are people you wouldn't do ANYTHING for.

 

 

No flu mist would be because of the respiratory issues; I have kids who cannot get flumist because they have had wheezing problems in the past.

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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.

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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.

Obviously you know her best, but my son did very well when given some independence. He has a dumb phone. I must know where he is (I'll randomly check) or he loses the freedom for a set time.

 

My son is also very, very splintered in skills. He could walk to the pizzeria alone, get a couple of slices, and walk home, before he was capable of wiping his tush.

 

My son is allowed to "run away" on our street. If he leaves the street, he must have permission. If he doesn't get permission, I call the police and he loses freedom. So far (3 years) he's only ever walked on the property or street to calm down.

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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.

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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. ;-)

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Find out locally. Here I hear good things. Maybe your ABA provider knows the local situation from other clients.

 

My understanding is they write down the info you give them into a computer file.

 

My understanding is you make an appointment, and you are going to talk to somebody who deals with this kind of thing -- a nice and friendly person.

 

The neighboring town had a special day to register kids with autism earlier this year, my town does not do that (yet), you just make an appointment.

 

If they act like you are crazy when you make the appointment, then don't do it!

 

But honestly I think this is routine! I think you will be perceived as somebody being proactive and taking advice that is frequently given by people who work with autism.

 

It is not like you are saying something bad. Lots of little kids do it, it is not like they are bad 4-year-olds who are going to be "brought to the attention of the police." I have a younger child on this, I am familiar with younger kids, and already being in the computer system for years before they get to the middle school years.

 

Honestly, when it would have made the most sense for me to do it, I did not even consciously realize my son had autism. It was the most problematic before he was diagnosed, or while I was waiting for the appointment. Now I know about it, but it doesn't seem like a current issue, or I would totally do it. Also my son likes "community helpers" and we go to open house at the fire station and things like that. This is the same kind of thing --- just like firefighters do community events to familiarize themselves to kids, police officers do the same thing.

 

Edit: Thinking about this more: I am at an age where I think the police are going to have a goal to come across very nice and non-scary, and give the child a teddy bear. Like -- I would expect my child to get a teddy bear, I hear they do that.

 

Also practically speaking, there is nothing where they are going to come by our house. It is only something where if I call the police b/c my son has gone missing, they have the information in their system already. You don't have to sit and explain while your child is missing. That is all that happens -- they have info on-hand if you do have to call and say your child has eloped.

 

But do ask locally!

Edited by Lecka
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An idea for you about who to contact at the police department.  Our neighbor started a community watch program and now a "Community Resource Officer" comes to our neighborhood monthly to talk about current crime reports, safety, etc. I would talk to an officer in that or a similar role - they should be used to speaking with the public and if they can't help you, they can find someone who can. Our police department goes out of their way to develop a good relationship with kids in the community; it helps make their job easier when there is a crisis if a child is not afraid of them.

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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.) 

 

Just chiming in here on the shot issue -- when our daughter was very young (soon after diagnosis) someone told me to always use a topical numbing agent for every shot or blood draw and to ask for shots to be given in a quiet, private setting by a calm nurse with only one shot per visit. They said that if we did not do that, we could end up with an autistic teenager who would could be quite big and strong who feared any sort of "stick" at a doctor's office.

 

We have followed those instructions for many years.  Our daughter is now 12 years old and she is already two inches taller than I am. She has never cried for shots or blood draws ever since we started using the topical numbing agent EMLA and the rest of the process recommended to us.  

 

I don't know if there is still time for this or not in your daughter's case, but you might want to explore it with your pediatrician.  

 

As far as tracking -- an iPhone with parental controls would work.  I looked at Angelsense.  It may cost more than adding a line to an already existing family plan. My family plan would cost an additional $10 to add another phone line. Plus, my child would carry it with her all the time because it has games, etc.  

 

Edited by treasuremapper
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Just chiming in here on the shot issue -- when our daughter was very young (soon after diagnosis) someone told me to always use a topical numbing agent for every shot or blood draw and to ask for shots to be given in a quiet, private setting by a calm nurse with only one shot per visit. They said that if we did not do that, we could end up with an autistic teenager who would could be quite big and strong who feared any sort of "stick" at a doctor's office.

 

We have followed those instructions for many years.  Our daughter is now 12 years old and she is already two inches taller than I am. She has never cried for shots or blood draws ever since we started using the topical numbing agent EMLA and the rest of the process recommended to us.  

 

I don't know if there is still time for this or not in your daughter's case, but you might want to explore it with your pediatrician.  

 

As far as tracking -- an iPhone with parental controls would work.  

Thank you for sharing this!  I thought maybe I was odd or overprotective having the dentist use gas with my ds, but you've put into words what my gut was sensing.  And now I realize it's ok and wise to continue it in other settings too.  As you say, I'd MUCH rather he was totally cool with things, like no big deal, rather than having him so anxious he bucks later. 

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