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#31 of 50 Old 07-28-2011, 03:56 PM
 
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We've moved a lot for my DH's job, and the situation you are in right now would push ALL my DD's buttons. She needs stability and routine.

 

May be realizing that your DD's behavior is partly about the situation, which is going to end soon, will help.


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#32 of 50 Old 07-28-2011, 05:22 PM - Thread Starter
 
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#33 of 50 Old 07-28-2011, 06:33 PM
 
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Moving is always really tough, even for super adaptable kids.  We're at nearly two years post move and DS is still not entirely adjusted. Does the military itself offer any helpful services for you?  Here in Canada we have a lot of military family resource centres and the like.  What do you have available in the US?


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#34 of 50 Old 07-28-2011, 09:05 PM
 
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#35 of 50 Old 07-28-2011, 09:19 PM
 
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Parenting an ASD kid isn't like parenting another kid. It's just not. You don't suck at parenting her, she's most likely doing as well as she is, going for as long as she did without a dx, because of some great parenting on your part.

 

But now that you have more information, and access to professionals with experience with kids like her, it will get better. You'll be able to tweak your parenting in ways that will be helpful for her.  You'll know that her struggles aren't because of some failing on your part. It's really not personal.

 

I think that we get the kids we get for a reason. So many times I've wished that DD could have had a different mother, a more patient, organized mother. Some one more perfect. But I have to trust that she got me for a reason, that I'm the best mommy for her, and that our muddling through this together is how it's supposed to be.

 

When she isn't doing well it breaks my heart. And I would do anything to fix it. When she is doing well, I can see better that how she is doing isn't directly tied to me. I don't know why some kids are on the spectrum. I don't know why life has to be so difficult, and at time painful and unhappy for her.  I spent some time in therapy coming to a place of peace about DD's struggles. I think that it's really normal for moms to be tied up in how our kids are doing, and for most moms, that's OK. It's doesn't rock their sense of self.

 

But for a parent of a kid with even mild special needs, that's not a firm foundation. I've had to find my own center and figure out how to stay there, regardless of how my DD is doing.

 

But that's easy for me to say right now because right now she's doing really well. It's possible that if she slides again, I'll loose my center again.  It's very hard to stay in your own center when your child isn't doing OK.


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#36 of 50 Old 07-30-2011, 03:59 PM
 
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Not happy that you are going through it, but happy I'm not alone. I can take him to a million dollar dinner and he'd freak out about the one thing on the menu that they don't have. Sigh.


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#37 of 50 Old 08-04-2011, 09:14 AM
 
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One thing I've learned as a parent of a child with high-functioning ASD is that I'm not super-human. I live in a stressful relationship with this child. It's hard parenting her. I need extra help and supports to survive and to thrive as her parent. So, I get counseling for me. I go to boards like this for me. I research things so that *I* better understand what she's doing. But ultimately I do all of these things to help *me* cope with *her* more effectively. Sometimes it's easier to bring the mountain to Mohamed, so I change what *I* am doing or expecting or get extra support to help me maintain my calm.

 

I just felt I needed to say that. I"m not coming down on anyone. Just trying to convey how important it is to feel supported and understood when your SN child is really presenting you with challenges that are hard to get emotional distance from as a parent.

 

My 5 y.o. DD can be very negative and it's exhausting. Remaining neutral takes SO much concentration and energy. When I get tired, it becomes almost Herculean. Something I've learned about her is that she has a LOT of anxiety that she has trouble understanding or processing. Also, she's prone to low blood sugar so if she's at all hungry, the negativity and contrary behavior starts up. I've had some success with asking her what she wants when she starts complaining about an activity. When she gets riled up, I often just say, "It sounds like you're having some trouble right now." and offer a hug. I've found that the anxiety can be counteracted with physical stimulation like bear hugs, deep pressure massage or joint compression. Rocking gently works really well, too.


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#38 of 50 Old 08-04-2011, 12:54 PM
 
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The main thing I'd suggest is in your head trying to remember that negatively may be primarily anxiety. So, whatever stuff you can do to lower anxiety is helpful and when you get settled getting in with a good therapist might help a lot.

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#39 of 50 Old 08-05-2011, 11:20 AM
 
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We had a bad day yesterday (though it ended well). Looking back I can see where I went wrong in some instances...

 

I had been talking about going to a spot on the river near our home we call the "swimming hole". The kids love it there. I'd made plans to go to another spot on the river with a friend and her two kids. We'd never been there before. We chose it because of the huge railway trestle that was just restored and is now open to the public. The plan was to see the trestle then go down to the river to swim. 

 

DS was remarkably easy to get out of the house. No complaints, happily got ready and got into the car. I should have suspected then...

 

When we got to the place he was really happy at first, until we marched along a short trail to the trestle. The other kids left him behind, he got tired, and when he saw the trestle he started complaining, loudly, that this wasn't what he wanted. He was calling my friend and her kids names (thankfully her eldest as AS so she was very sympathetic), being really rude to pretty much everybody, telling me to shut up, etc. He did eventually decide to go on the trestle with me, and then appeared to enjoy it, but on the way back complained about the heat. Then we couldn't find the trail down to the river, and what options there were were not safe for the kids, so we had to abandon our plans. 

 

DS was simply awful. Telling me and everybody (loudly) to shut up. Complaining that he wasn't having fun. Then on the way back he insisted he couldn't walk any further (and I was hauling all our gear so there was no way to carry him). He was rude to anybody who walked by...I was trying hard not to cry, trying hard not to say something mean to him that I would later regret. I was rough with him, shoving him along the path and telling him he had no choice but to walk, etc...it was a really low point for us. 

 

I think the problems were many. And I'm sharing them to give some ideas about other things that can underlie this sort of behaviour (I agree anxiety is a big one):

 

1) obviously he had certain expectations that were not met when we got to where we were going. I should have been more clear with him on what to expect before we even left the house.

2) I secretly consider my kids to be lazy when it comes to walking; walking through the woods is my favorite thing but they whine and complain within five minutes. Talking to my friend later I learned that poor muscle tone is common with AS kids and I realized it's possible that he is, in fact, in lousy shape and even walking along a 3 minute trail could be too much for him (OTOH, I've seen him running around like a lunatic for longer than that at home). 

3) it was HOT out, although we were in shade most of the time, the brief time we were out in the sun is when he started getting really bad. he complained about the heat and I later realized he does have sensory issues so perhaps this was worse for him than for others

 

We all ended up going to a nearby park to swim: I had to stay with him elsewhere for quite a while before he finally agreed to go to the swimming area with the rest of them. After that he had a blast and everything was fine. 


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#40 of 50 Old 08-05-2011, 12:30 PM
 
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Piglet said:

 

Quote:

1) obviously he had certain expectations that were not met when we got to where we were going. I should have been more clear with him on what to expect before we even left the house.

2) I secretly consider my kids to be lazy when it comes to walking; walking through the woods is my favorite thing but they whine and complain within five minutes. Talking to my friend later I learned that poor muscle tone is common with AS kids and I realized it's possible that he is, in fact, in lousy shape and even walking along a 3 minute trail could be too much for him (OTOH, I've seen him running around like a lunatic for longer than that at home). 

3) it was HOT out, although we were in shade most of the time, the brief time we were out in the sun is when he started getting really bad. he complained about the heat and I later realized he does have sensory issues so perhaps this was worse for him than for others

 

 

I so hear you about being clear in communicating what's going to be happening to a child. I fall into the trap of assuming she'll get it and sometimes my DD just does NOT understand why we're not doing what she *thought* we'd be doing. It's a recipe for ugliness in our house.

 

I wanted to address the low muscle tone part. While it *may* be due to low tone, it could also be poor proprioception and an uneven walking surface. My DD has difficulty with uneven surfaces because she has poor input from her body. Her mind doesn't necessarily process what her hands or feet are experiencing properly. So we've had to do a lot of therapy around balance and interpreting input when walking on various surfaces. Lots of things can help with this - walking barefoot in the grass, playing barefoot in a sandbox, walking over textured surfaces like cobblestones, rough mats, etc.


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#41 of 50 Old 08-06-2011, 09:18 PM - Thread Starter
 
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#42 of 50 Old 08-06-2011, 10:38 PM
 
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#43 of 50 Old 08-07-2011, 07:28 AM - Thread Starter
 
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#44 of 50 Old 08-07-2011, 09:04 PM
 
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Quote:
She asked about it for 2 hours straight, repeating the request about every 2 minutes.

My DD does this. If she wants something, she repeatedly asks for it or about it until she gets it. Even if we tell her she's going to be getting it later, she asks over and over and over until it happens. She has no concept of the passage of time and it's very  hard for her to understand delayed gratification.


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#45 of 50 Old 08-08-2011, 05:25 PM
 
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Quote:
Originally Posted by Plummeting View Post

Things not going as expected are a BIG trigger for horrible behavior for my dd. She really doesn't seem able to deal with disappointment. She also gets an idea in her head about what she wants to do and will not.let.it.rest. She just keeps asking over and over and over, and you either tell her what she wants to hear or she won't stop unless you give an absolute and firm no, which results in an all out meltdown. So for instance yesterday we went to the zoo. There is a small park with giant turtle statues she likes to climb on near the zoo, and she wanted to go there when we were done. She asked about it for 2 hours straight, repeating the request about every 2 minutes. I told her I wasn't sure that we'd have time. Then eventually I said, "Yes, if we have time." That was a big mistake, because she just hears "yes" and not any of the qualifiers, and we really didn't have time once we were through with everything at the zoo, and besides that, dd2 fell asleep about 30 seconds after we got into the car, so we couldn't go anyway. I know better than to say the word 'yes' in any way, shape, form or with any qualifiers, unless I'm certain it will work out, but she wears me down with her incessantly requesting the same thing over and over. I do know better, though. Ugh. I'll have to be more disciplined.

 

I just don't know what to do when she gets that way, though. If I tell her I'm not sure she keeps asking. If I tell her no she has a meltdown. If I tell her yes, if XYZ happens, she thinks it's a done deal.


We have this same problem with DS.  He has a need for the idea of the plan he pictures in his head to match with reality.  Sometimes it can erase whatever fun he had in his mind.  For example, he went to a youth movie night this year.  The movie was supposed to be Narnia, but all the other kids requested the other movie.  He argued at first but was convinced that maybe it was OK to try the other movie.  He appeared to watch it all happily, but when the movie night was done and he realized Narnia was not happening, he blew a fuse even though the liked the movie.  This seems to be what happened with your DD.  She pictured seeing this turtle but couldn't let it go.

 



Quote:
Originally Posted by Linda on the move View Post




Why not just leave the zoo with time for the turtles? Why not plan them in as an important part of the day?

 

Huge things about our family life revolve around what works for my DD. Huge. We plan vacations around her. We plan family fun around her.

 

If she isn't OK, then it's going to be miserable for everyone.

 

Your DD needs you to make a plan that works for her, let her know what it is, and then make it happen.  Playing it by ear doesn't work for her.

Agreed.  Major planning is probably necessary.
 

 



Quote:
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Because she had certain things she wanted to do at the zoo, and those things were more important to her (according to her), and we had things we had to do after the zoo with other people. I wasn't sure if we would complete all of the things she wanted to do at the zoo and still have time to make our other commitments. In this situation it was not possible for her to get everything she wanted. I wasn't sure if it would be or not, at the beginning of the excursion.


What I'm wondering is, have you tried breaking down the logistics of these situations to her?  Could you say, "I think we might be able to both go to the zoo and to the turtle statue.  To do that, we need to go to the zoo at X time," and show her with your watch or tell her what it would say on her's.  If she asks to do more at the zoo, you could then remind her, "We have X minutes until this time when we need to leave  if you want to see the turtle statue."    If she asks to do something that for sure means that she would miss out on the turtles, you could check in with her and say,"If we do this activity, you won't be able to see the turtles.  Do you want X activity, or the turtles,"

 

I'm thinking your DD might br more upset with a change of plans than a direct no to something not already planned.  I'm also thinking she might need to have the choices broken down for her to help her see how she can make her plan a reality that works for you all.  Being very verbally direct about plans and rules, no matter how many times I repeat myself and no matter how small of steps I need to break things into is about yhe only way I've been able to survive combining DS's needs with those of the rest of the family's.

 


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#46 of 50 Old 08-16-2011, 12:40 AM
 
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We just had a rough day of it. And worrying about tomorrow! My ds is signed up fo three days of cub scout camp, he has had some anxiety about going because of some pain in his ankles he had last year when he went.. He's having a really hard time letting that go and I'm really worried cuz I don't know if he is having a hard getting over all the anxiety from the pain or his ankles are hurting still and doesn't want to tell me cuz he doesn't want to go back to the doctor or he's just using it as an excuse cuz he knows it works..

Anyhow, he didn't want to go this morning but ended up having a great day with some minor issues anyway.. So tonight at home he was overtired and had a major meltdown, brought up sore ankles and not even being asked if he wanted to go to camp and now making him go, my poor dh just couldn't get thru it he ended up feeling like a horrible parent and just giving up..

So here's my question.. Do we continue going and finish the other two days.. I know he will have fun, but kind of expect a possible meltdown each night.. Or just throw in the towel and call it good? We don't want him to think it's ok to quit something you've started? We have so much trouble with this type of issue..
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#47 of 50 Old 08-16-2011, 08:12 AM
 
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So here's my question.. Do we continue going and finish the other two days.. I know he will have fun, but kind of expect a possible meltdown each night.. Or just throw in the towel and call it good? We don't want him to think it's ok to quit something you've started? We have so much trouble with this type of issue..


Since it is only two days and the problems only happen at home, I'd probably have him finish it. Ds is reluctant to try new things so though we still have him try we agree to a time limit; right now he is in gymnastics for a minimum of 8 classes because I have to give 30 days notice to the gym for him to drop it (his only objection is that he doesn't like being sweaty). After 4 classes he can tell me whether or not he wants to continue so I can give notice.


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#48 of 50 Old 08-16-2011, 08:26 AM
 
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I'd have him go again.

 

With my DD, if we let her only do things she wanted to, she wouldn't have left her bedroom for a couple of years. Honestly. Eventually, she figured out that there are some things she enjoys, and we are THANKFULLY past that stage, but we had to push push push to keep her from just hiding from the outside world.

 

(I still make her do things she doesn't want to, but it isn't so horrid now)


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#49 of 50 Old 08-16-2011, 08:28 AM
 
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I'd finish it, but I'd plan on an early bedtime and maybe a bath to soak his ankles.  I'd tell him that the early bedtime and bath is because he worked so hard at camp, and that sometimes having fun can be tiring.  It's an opportunity to teach him some self-care skills.
 

Quote:
Originally Posted by Mommako View Post

We just had a rough day of it. And worrying about tomorrow! My ds is signed up fo three days of cub scout camp, he has had some anxiety about going because of some pain in his ankles he had last year when he went.. He's having a really hard time letting that go and I'm really worried cuz I don't know if he is having a hard getting over all the anxiety from the pain or his ankles are hurting still and doesn't want to tell me cuz he doesn't want to go back to the doctor or he's just using it as an excuse cuz he knows it works..

Anyhow, he didn't want to go this morning but ended up having a great day with some minor issues anyway.. So tonight at home he was overtired and had a major meltdown, brought up sore ankles and not even being asked if he wanted to go to camp and now making him go, my poor dh just couldn't get thru it he ended up feeling like a horrible parent and just giving up..

So here's my question.. Do we continue going and finish the other two days.. I know he will have fun, but kind of expect a possible meltdown each night.. Or just throw in the towel and call it good? We don't want him to think it's ok to quit something you've started? We have so much trouble with this type of issue..


 

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#50 of 50 Old 08-17-2011, 09:30 PM
 
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I agree with the others that what he'll get from the experience is worth the frustration of outbursts at home. He's in his "safe place" at home and that's why he's doing the melt downs there. He's got to hold that anxiety in all day and cope. Hard work for a NT kid. Super hard work for a kid with ASD. Do what you can to minimize the outbursts and just ride it out. That which does not kill us makes us stronger, right? ;)


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