How do you deal with a "difficult" child on vacation?

[kelleyrn2000]

I just wanted to say to all you parents! Thanks for helping me, and I respect all of you for what you deal with on a daily basis. I keep telling myself that God doesn't give me more than I can handle, but there are days I cry myself to sleep because of the stress. And I know there are families going through so much worse than myself. I have been through alot between my 3 kids having health issues, but I am also so grateful that I have them...they mean the world to me as I am sure your children mean the same to you.

 

[ms mouse]

I feel for you and hear your frustration but you really need to have your child evaluated. You almost seem to be afraid of a diagnosis, but it may be something that can be handled easily if you had the right tools. Get some advise and input from a professional, the sooner you find out what is wrong the sooner you can address the problem.

 

[OneLittleSpark]

Thank you everyone for your tips. I have thought about sensory issues in the past, but her symptoms are very inconsistent, so it doesn't seem that likely unless she has a milder form of it. There have been periods of time (months even) where her behavior has been better and her moods more even keeled. Her latest "difficult period" started back in December and hasn't let up for an extended period of time since then. The ADHD is still a possiblity (she is the type to need to constantly wiggle around at home but at school I think she seems to be able to control herself just fine) but it doesn't seem to me to be the cause of her problem IMO.

These kind of conditions often come with a whole group of friends. For instance, very often someone with an ASD will also have at least some of ADHD, Dyslexia, Irlen, OCD, sensory processing issues, etc. It could be that she has more than one condition, and they all feed into each other. Also, even a completely unrelated illness or event can kick one of these conditions into action. I've always had sensory processing issues, but since I've developed my Fibro, it has got a lot worse. She's going through a 'difficult' age anyway, and there are lots of emotional and physical stresses that start cropping up around 8 - 10yrs, so it could just be that these other things are making her more sensitive to an existing condition.

I also find that I have good days and bad days with the sensory issues, so one day (or even one minute!) I can listen to my music perfectly happily, or have a revved up car go past without a flinch; but the next even the tiniest sound hurts my ears. For me, it's not even as simple as bad day = everything is stressful / painful; good day = less stress. At the moment, I'm trying to type 'gently' because the clicking of the keys is hurting my ears, but the guys in my office are having a fairly loud conversation and that doesn't bother me in the slightest. The weirdest thing can cause a problem, and often it will be something that wouldn't even occur to you as being an issue (even I'm surprised by some of the things that set me off!). Just be aware that her symptoms being on-and-off isn't necessarily a sign that they're not caused by a permenant problem.

Thank you for all the tips! It's nice to have your insight too, and I agree that she seems to have trouble understanding her feelings. For example, when she is sad, it may come out as anger, and we have no idea that she was feeling sad, or why she is sad. It's so confusing to me.

When I was her age I sometimes found it hard to express my feelings, or even work out what they were, and I'm sure there were times when this confusion made me a little terror (my sister was a piece of cake, compared to me )

Can I just point out that just because she's doing well at school (it sounds like both academically and behaviourally), doesn't mean you shouldn't get things checked and tested for. I was a top student through most of my school years which means no one thought to look at the things I struggled with (neatness, memorization, etc.) until I got to college at which point they became real problems. I was diagnosed at 22 with a learning disability (specifically executive function problems), auditory processing problems, and some level of SID.

this was the same for me and my Dyslexia / Irlen. In fact, the only reason I got diagnosed at all was because I want along to the Disability Resource Centre at my uni and asked to be tested. I still don't have official labels for various issues I've got going on. My mother knew that I was 'different' from day one, and she did try to get me tested for dyslexia a couple of times, but my reading age was OK for my actual age. I do wonder how many of us there are out there who have disabilities that never got 'caught' as we were growing up.

ONE LITTLE SPARK: Thank you so much for your post. I joined this thread hoping to help a little, but I ended up gleaning a lot of tips from your advice. It helps to be reminded of some of the issues that seem small to us but are huge for DS. Thanks again, Kim

Glad to help! The problem is that these issues are often most obvious during childhood, when the person doesn't really have the words to describe what's going on. Also, if things have always been like that for you, you just assume that's the way it is for everyone (it wasn't until I was in my 20s that I realised that white walls don't strobe at most people! ), so you never bother to find the words. In some ways I'm in a fairly 'privalidged position', because I grew up with these issues and found various coping mechanisms, but I'm having to do this all again now that the Fibro has ampped everything up a level. I just want to do anything I can to help others dealing with the same sort of issues.

I just wanted to say to all you parents! Thanks for helping me, and I respect all of you for what you deal with on a daily basis. I keep telling myself that God doesn't give me more than I can handle, but there are days I cry myself to sleep because of the stress. And I know there are families going through so much worse than myself. I have been through alot between my 3 kids having health issues, but I am also so grateful that I have them...they mean the world to me as I am sure your children mean the same to you.

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." - Mother Teresa

 

[KPeveler]

Can I just point out that just because she's doing well at school (it sounds like both academically and behaviourally), doesn't mean you shouldn't get things checked and tested for. I was a top student through most of my school years which means no one thought to look at the things I struggled with (neatness, memorization, etc.) until I got to college at which point they became real problems. I was diagnosed at 22 with a learning disability (specifically executive function problems), auditory processing problems, and some level of SID. The real problem is that no one knows how to teach coping mechanisms to an adult because you've got many more years of habits to break. The neuropsych told me if I hadn't been so smart (and compensating with pure intelligence) I'd have been in her office by the time I was 8 and I really do which sometimes that someone had recognized this all in me when I was young enough that I could have been taught skills. If you think something might be up with your kid, trust your instincts and get it checked out.

I was not diagnosed with anything until age 15 and older, but I have diagnoses of ADD/ADHD, depression, anxiety, and some form of a sensory thing.

I was a top student, did not get in trouble in school (not even "name on the board thing). I never got a grade lower than an A til 7th grade (got 1 A-) and no lower grade than a B+ until I got to college.

I would suggest psychiatry for a new eval - this goes far beyond just "difficulty."

 

[bookwormde]

What you describe often comes from sensory processing disorder and the associated anxiety.

have you had her evalued to sensory differentials. Everyday things that have no impact on the average person can coase major issues for individal with SPID.

bookwormde

 

[kampfirekim]

These kind of conditions often come with a whole group of friends. For instance, very often someone with an ASD will also have at least some of ADHD, Dyslexia, Irlen, OCD, sensory processing issues, etc. It could be that she has more than one condition, and they all feed into each other.

I also find that I have good days and bad days with the sensory issues, so one day (or even one minute!) I can listen to my music perfectly happily, or have a revved up car go past without a flinch; but the next even the tiniest sound hurts my ears. For me, it's not even as simple as bad day = everything is stressful / painful; good day = less stress. At the moment, I'm trying to type 'gently' because the clicking of the keys is hurting my ears, but the guys in my office are having a fairly loud conversation and that doesn't bother me in the slightest. The weirdest thing can cause a problem, and often it will be something that wouldn't even occur to you as being an issue (even I'm surprised by some of the things that set me off!). Just be aware that her symptoms being on-and-off isn't necessarily a sign that they're not caused by a permenant problem.

When I was her age I sometimes found it hard to express my feelings, or even work out what they were, and I'm sure there were times when this confusion made me a little terror (my sister was a piece of cake, compared to me )

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." - Mother Teresa

Again, OLS, beautiful insight. Definitely true that ASD is often accompanied by ADHD and other little "friends" as you put it. So many disorders also have similar or crossover symptoms and traits.

Especially the second paragraph that I quoted from your post has given me some understanding of DS5 (autistic). I have never perceived that he has a lot of sensory issues. But, seemingly without rhyme or reason he will melt down, rage, or exhibit any number of behaviors, including uncontrollable laughter. Sometimes when things are calm and quiet he has the need to go berzerk, or if things are getting a little chaotic, he may join in, or he may go elsewhere, or he may melt down. It hasn't ever really occurred to me that sensory processing probs didn't have to be consistent. (Love the typing noise/loud conversation comparison. I totally get it!)

I believe that OP NEEDS to have DD evaluated further and never give up until she has the answers she needs and an appropriate treatment plan. I agree with previous statements that this is more than just being difficult. There do seem to be underlying issues there.

As to your Mother Teresa quote: AMEN!

 

[kampfirekim]

Thank you everyone for your tips. I have thought about sensory issues in the past, but her symptoms are very inconsistent, so it doesn't seem that likely unless she has a milder form of it. There have been periods of time (months even) where her behavior has been better and her moods more even keeled. Her latest "difficult period" started back in December and hasn't let up for an extended period of time since then. The ADHD is still a possiblity (she is the type to need to constantly wiggle around at home but at school I think she seems to be able to control herself just fine) but it doesn't seem to me to be the cause of her problem IMO.


We don't really know what sets her off half the time. Sometimes her feelings are hurt, sometimes things didn't go her way, sometimes she just gets upset and we don't know why she is mad. And when she is in a good mood, the child is angelic, loves to help, does nice things for others (like cleaning the bathroom out of the blue), it's just such a huge difference!

I have found that after DS5 has "held it together" at school, his behavior can fall apart at home. His OT has told me many times that this is very normal behavior and she hears it from parents all the time. I have heard all kinds of behavior stories regarding kids w/ADHD. Both of my boys are ADHD and how it affects them could not be more different. DS6 is otherwise very typical except for a little hyperactivity at times, main prob is focus. DS5 (autistic)bounces off the walls, can't process emotions and in that regard sounds similar to the last statements I quoted from your post. I encourage you to please keep having her evaluated until you get to the bottom of what the issue is. Believe me, once you have the answers it is much easier to deal with the day to day issues. Hang in there!

 

[kelleyrn2000]

I am really taking into consideration the sensory testing. I am just at a point right now where I am so mentally exhausted that I'm not sure I can pursue anything. When just getting her off to school somedays is enough to wear me down, the thought of taking her for more testing and actually convincing her to go is very overwhelming (it will be extremely difficult to get her to go back).

In reality we have good times too, it's just the negative behavior is sooo draining. And I am almost always the target of the negative behavior, much more so than DH or her siblings. I try to get her to talk or work out the issue, but usually I get nowhere, just mean comments or dirty looks. It feels helpless

 

[canadianjovigirl]

Another mom just saying your not alone!!! My daughter started this behavior at age 7 and she is now almost 16 and she was diagnosed with a mood disorder and a mood stabalizer was a godsend for us as well as a good sleep which she was not always getting due to stress and her racing thoughts. Things are crazier now that she is older and is trying to get off meds...she spent some time in the hospital but is off medication and dealing with it well so hold on to hope.........things get better, take a deep breath and grap onto the good memories as they help me thru the bad times. Feel free to pm me if you would like more info on what we went thru.

 

[kelleyrn2000]

Another mom just saying your not alone!!! My daughter started this behavior at age 7 and she is now almost 16 and she was diagnosed with a mood disorder and a mood stabalizer was a godsend for us as well as a good sleep which she was not always getting due to stress and her racing thoughts. Things are crazier now that she is older and is trying to get off meds...she spent some time in the hospital but is off medication and dealing with it well so hold on to hope.........things get better, take a deep breath and grap onto the good memories as they help me thru the bad times. Feel free to pm me if you would like more info on what we went thru.

Thank you! It's so frustrating because she can be the sweetest most helpful child and also the meanest and resistant child....it's a rollercoaster, and I can't always predict when it's going to go downhill. And since having my third child, I have had bad PMS, and that makes dd and I a not so great combination sometimes.

 

[kampfirekim]

I am really taking into consideration the sensory testing. I am just at a point right now where I am so mentally exhausted that I'm not sure I can pursue anything. When just getting her off to school somedays is enough to wear me down, the thought of taking her for more testing and actually convincing her to go is very overwhelming (it will be extremely difficult to get her to go back).

In reality we have good times too, it's just the negative behavior is sooo draining. And I am almost always the target of the negative behavior, much more so than DH or her siblings. I try to get her to talk or work out the issue, but usually I get nowhere, just mean comments or dirty looks. It feels helpless

You hang in there! From one mom to another, it is hard and yes, mentally draining to deal with these types of behavior issues day in and day out, but you can't let it stop you from continually, relentlessly pursuing the answers you need. Believe me, I have an autistic son and the road was and still is rough sometimes, but you can do this. I love one little sparks sig quote "I know God will not give me anything I can't handle. I just wish He didn't trust me so much." - Mother Teresa . I feel the same way on a daily basis. In fact, sometimes I secretly (to myself) call DS5 "My blessing I cannot contain". But, He DID trust me so much, so I press on knowing that if He believes I can do it...then I CAN do it! So can you. God Bless you and may He put you on the right path of discovering what your daughter needs and put the right people in that path to help you on your way. (I hope you are not offended by that prayer.)

 

[LaurieN]

I am really taking into consideration the sensory testing. I am just at a point right now where I am so mentally exhausted that I'm not sure I can pursue anything. When just getting her off to school somedays is enough to wear me down, the thought of taking her for more testing and actually convincing her to go is very overwhelming (it will be extremely difficult to get her to go back).

In reality we have good times too, it's just the negative behavior is sooo draining. And I am almost always the target of the negative behavior, much more so than DH or her siblings. I try to get her to talk or work out the issue, but usually I get nowhere, just mean comments or dirty looks. It feels helpless

It's a good idea, afterall it can't hurt and answeres (the right ones) will help you as well as her in the long run. I understand how you feel..I am usually the target of DS's anger, I also get blamed for everything. DS8 was diagnosed with ADHD 1.5 years ago, both DH and I didn't really think it was the problem. Well.....just last week he was also diagnosed with Mild Asperger's. I'm still trying to wrap my mind around it, but at least things make sense now and we can move forward and help him!
I wish you luck, I know how frustrating it can be
Laurie

 

[kelleyrn2000]

Well, we made it through 75% of the day today, then it went sour. It is so mindboggling to me how we can go from angelic to "mean" and defiant. While I was gone last night I came home to a scrubbed toilet and she had also put ds to sleep for me along with a couple other things. This morning while I was gone she made my bed and made story books for dh and I to read when we went to bed tonight. She can be so sweet! And then something upsets her and it's a completely different child. Today it was that she hit her older sister, and I sent her to her room, which set the pace for the rest of the evening with her. I hate having her go to bed angry, it's the worst!

 

[LMC]

I have a DS(9) who can be extremely difficult. If you are asking for advise as to how to discipline while at WDW if she were to do something as bad as run away from you, this is what I would do to my DS if he did it. Me or DH would take him back to the hotel immediately and he would sit the rest of the day/nite with no tv, no ds, no entertainment at all. He would sit in the bathroom alone if need be. If his attitude were not better the next day we would repeat. The other parent would stay in the park and enjoy the day(s) with the other children. Extreme, maybe but the seriousness of the offense needs to be realized by the child. This particular DS of mine did get lost one time on accident while at MGM and he has never left our side since. I might add my child is very ADHD and I suspect may have other issues undiagnosed as of yet. I just had a 10 minute argument with him about draining the pool and refilling it or getting the sprinkler out because he is hot; it's 72 degrees today not doing it.

 

[Pumpernoodle]

I was wondering this too. If the world just 'gets too much' it sometimes seems like the only option is to shut down and get away from everything. I have some form of mild undiagnosed AS / SPID and I know what it feels like to have the world screaming at you (at least, that's how it can feel for me). When I get particularly bad, I can't string a sentence together; all sounds physically hurt; I feel like the world is pressing in on me; crowds make me feel like I'm suffocating; and the best communication I can manage is a random hand flapping. If this is what it's like for your daughter, it would 'make sense' of her running away, and also getting stressed and angry.

If she has these issues, she probably doesn't yet have the control of language to fully explain what's going on in her head (heck, even I can't fully explain it, and I'm in my mid-twenties!). You may need to help her with this somehow - perhaps through art, physical movements or using similes. If she can find a way to better communicate her needs and feelings, it may give you an opportunity to help reduce her stress and handle it when it happens. I know I'm making it sound like it's simple, but I know, it really isn't. Unfortunately there are no magic fixes for these issues, and there's never really a cure, but even if it just makes life a tiny bit easier, I'm sure it will make a huge difference to you.

As for what you can do at Disney, I'll give you a few suggestions, and you can see if anything sticks:

Ear plugs or ear defenders to use in busy crowds and during loud things like fireworks. Make sure she has these to hand, so that she has complete control over them, and can decide when she needs to block the world out.

A pediatric wheelchair / SN stroller could be a help to her. Partly it will make it harder for her to bolt; but it will also give her a 'safe place' to go to, and put a bit of a barrier between her and other people. The downside is that she will be lower down, so crowds will feel more oppressive (I use a wheelchair, and tight crowds are really stressful for me).

Make sure she eats regularly. I get more sensitive when my blood sugar is low (as Sue said), but I don't always feel hungry until after I've begun 'stressing out'. Carry some snacks around with you, so you don't get caught short in a line.

Try and check in with her regularly. These things can often be building for a while, and it may be that even she doesn't know it's happening. A quick, quiet conversation on how she's doing, and if she needs anything may just help keep her from boiling over, and let her feel more in control.

Keep her cool and hydrated.

Try to plan 'sensory breaks' into your day, to give her some time and space to wind back down. This could be going into a restaurant for a snack during a quiet time; sitting in an out-of-the-way place for a while; going to the cinema in the back of the Kodak building (Main Street Square, MK); or going to the first aid centre for a lie-down.

Make sure all her clothes are soft, breathable and non-constricting. During a bad patch, a scratchy top can cause me pain, and a tight necked-top can make me feel claustrophobic.

Keep an eye on her in places with strong scents, particularly perfume shops (I can't even go into the one in Paris, WS).

Have some of the retrieval techniques others have talked about (such as tracking devices) to use if she does bolt.


One of the big things that helps me when things are bad, is feeling like I have got control of the situation. I need to be able to block out or get away from the things that are stressing me, or I will just continue to escalate. You may want to arrange a signal with her that means 'Get me out NOW', for use when she's overwhelmed and can't talk. It may explain why she has run away from you before, and why she didn't respond at the zoo when you were calling for her; it may not be that she was deliberately hiding from you, but that she had to get away from external stimuli, and was so stuck inside her own head that she physically couldn't respond.

All of these things are just things that I know help me, they may not do anything for your DD. If anything here doesn't feel right, then it may not work for her; you know her better than I do, so don't be afraid to trust your gut.

I hope some of this helps you guys, and I hope the Disney magic does wonderful things for you all. If you or your daughter want to talk to me about any of this, you're welcome to PM me. This is such a tough thing to go through, and I wish I could give you a simple fix, but you know as well as I do that there isn't such a thing (if there was, I know you would have found it). Please remember that none of this is your fault - you are a wonderful mother who is doing everything that she can for her daughter, in a very difficult situation.





When you want to quote more than one post, just click on the little button next to the 'Quote' button. You can do this for all of the posts you want to quote, then when you hit the 'post reply' button, they'll all be there in the order you clicked on them.

Oh my gosh! You just changed my life. I am actually crying right now. i have been reading the thread because this sounds so much like my dd9. I even read the first paragraph to her and she had a look on her face that said "How did you know?" She is an extremely funny, smart, beautiful, kind, and creative child. She has always been "intense' and moody, but over the last few months it's escalated in ways I can't describe. We tried counseling, but they want to medicate her for ADD, and I truly don't believe that's the root of things. She is definitely sensitive--espescially to sound, and although she LOVE WDW, she needs to have breaks, and I have to keep her close as she is often sort of "walking into walls." I think she is just in sensory overload. Since things have gotten wors, and she has bolted from our home a few times, I am increasingly concerned that this will happen at Disney. I don't want to think of what could hapen to her. Your tips were wonderful, and I think I might buy a child locater too, just in case. I'm so glad to hear that I'm not going through this alone. I might PM you for more infor. To the OP...I understand what you are going through. I hope your family has a magical trip.

 

[kelleyrn2000]

Oh my gosh! You just changed my life. I am actually crying right now. i have been reading the thread because this sounds so much like my dd9. I even read the first paragraph to her and she had a look on her face that said "How did you know?" She is an extremely funny, smart, beautiful, kind, and creative child. She has always been "intense' and moody, but over the last few months it's escalated in ways I can't describe. We tried counseling, but they want to medicate her for ADD, and I truly don't believe that's the root of things. She is definitely sensitive--espescially to sound, and although she LOVE WDW, she needs to have breaks, and I have to keep her close as she is often sort of "walking into walls." I think she is just in sensory overload. Since things have gotten wors, and she has bolted from our home a few times, I am increasingly concerned that this will happen at Disney. I don't want to think of what could hapen to her. Your tips were wonderful, and I think I might buy a child locater too, just in case. I'm so glad to hear that I'm not going through this alone. I might PM you for more infor. To the OP...I understand what you are going through. I hope your family has a magical trip.

Wow, your dd does seem to be alot like my dd! Feel free to PM me to vent anytime....this weekend was rough....I'm actually looking forward to going to work tomorrow!

ETA I just realized you used the word INTENSE to describe your dd....that is EXACTLY my daughter....INTENSE!

 

[brergnat]

I have one of these kids. I am 99% sure he has SPD, although he is 'undiagnosed' right now. He has a MAJOR speech/language delay as well, so that complicates things greatly. He just turned 4. He has been "difficult" and "intense" his entire life...since we brought him home from the hospital!

I truly feel for you. I strongly urge you to have your daughter evaluated for Sensory Processing Disorder. In the meantime, get the book "The Out of Synch Child". This booked totally changed my attitude towards my DS.

We just got back from our first WDW trip. Our motto for the week was, generally, "no saying no". DH and I really relaxed discipline on DS. We tried to make the week fun and happy for both our kids (our other DS has Autism). We basically allowed our kids to dictate what we did and when. Rather than arguing with my "difficult" DS, we would just do what he wanted; let him eat what he wanted (this meant hamburgers, chicken nuggets, and fries ALL week), etc. Yes, I could have argued with him. I could have put my foot down, but the truth is, it was supposed to be a VACATION for all of us, and our boys' lives are very stressful, structured, and difficult. We let them be "in charge" and the week was very, very enjoyable.

We got a GAC, which was VERY useful, as many of my son's sensory needs involve different sorts of vestibular and perioceptive input, which he does IN lines, by hanging on the poles/ropes, spinning in place, flopping down on the ground, etc. By simply having a separate place to wait for the rides, we were able to avoid the meltdowns that ensue when we have to discipline him for doing this stuff in lines. Like, for example, he is NOT allowed to hang from ropes and climb on poles and walls, due to safety issues (as well as Disney's rules), but by simply telling him "no" or physically removing him, he falls down into major meltdown mode and things just spiral out of control very quickly for him. He has times where he NEEDS this sensory input, and if we deny him that, he cannot cope.

What was INVALUABLE to us as well were the PLAYGROUNDS at WDW. We used all of them, over and over again. Yes, it meant that our park time was limited, but that was okay. That and swimming in the pool provided great sensory input for our boys, and without it, I doubt we would have made it to day 3...(we've noticed this on other trips, where a pool and/or playgrounds were not available...those trips were nothing short of a glimpse of Hell...)

My best advice to you is, let your daughter have as much control as is practical. PRIOR to the trip, arrange for some times for your other kids to have one on one time with either you or DH, and let them do what THEY want, but I'd honestly take your other kids aside and try to explain what your DD is going through, and ask for their help in being flexible and willing to do what it takes to "keep the peace" for the sake of EVERYONE.

 

[kelleyrn2000]

I just wanted to thank everyone here again. I have no idea how to convince dd to go back to counseling or see a doctor to get more testing. I can't even get her to talk to me most of the time, and she has in the past refused to talk to the counselors/doctors. I have a friend who is a child psychologist, so today I asked her if I could meet with her sometime to prick her brain. She agreed so hopefully next time I can sit down with her and get some ideas of what to do next.

Also today, another friend gave me the name of a good counselor for myself, so I am going to look into going there. It seems like I am stressed and anxious alot lately and that makes it harder to deal with dd.

 

[Pumpernoodle]

That sounds great! Thanks for the offer of support, too. I will definitely be keeping in touch. Keep us posted and feel free to PM me if you want to vent as well. I'll be thinking about you.

 

[OneLittleSpark]

Again, OLS, beautiful insight. Definitely true that ASD is often accompanied by ADHD and other little "friends" as you put it. So many disorders also have similar or crossover symptoms and traits.

Especially the second paragraph that I quoted from your post has given me some understanding of DS5 (autistic). I have never perceived that he has a lot of sensory issues. But, seemingly without rhyme or reason he will melt down, rage, or exhibit any number of behaviors, including uncontrollable laughter. Sometimes when things are calm and quiet he has the need to go berzerk, or if things are getting a little chaotic, he may join in, or he may go elsewhere, or he may melt down. It hasn't ever really occurred to me that sensory processing probs didn't have to be consistent. (Love the typing noise/loud conversation comparison. I totally get it!)

I'm so glad I could help! I find that my sensory issues are all tied up with everything else that's going on, until it's one big mess. If the fatigue is bad, I might be more sensitive to noise; or maybe I'll have a day when the pain is playing up, and it will trigger off a problem with crowds; or it could be that I'm stressed about something, and I can't cope with physical contact. Often things can change very quickly (and can suddenly hit very hard), and it even catches me by surprise at times, so that would explain the 'mood swings'.

I am really taking into consideration the sensory testing. I am just at a point right now where I am so mentally exhausted that I'm not sure I can pursue anything. When just getting her off to school somedays is enough to wear me down, the thought of taking her for more testing and actually convincing her to go is very overwhelming (it will be extremely difficult to get her to go back).

In reality we have good times too, it's just the negative behavior is sooo draining. And I am almost always the target of the negative behavior, much more so than DH or her siblings. I try to get her to talk or work out the issue, but usually I get nowhere, just mean comments or dirty looks. It feels helpless

Of course it's hard for you - you've got a lot to manage! Please know that you're not 'failing' or anything by feeling overwhelmed; you are doing an amazing job looking after all of your family, in very difficult circumstances. Don't try to do everything at once, or you'll burn yourself out and your DD will feel swamped. I try to spread all of my doctor's and hospital appointments out, and can often have to play 'one thing at a time'. For instance, I'm way overdue for a dentist check-up, but at the moment all the hospital trips are having to take priority over that. It doesn't mean that I'm not taking care of myself, it just means I'm managing things in the best way I can. In the same way, you need to find ways to balancing appointments and tests so that they don't overwhelm you or your daughter. You're doing wonderfully - never forget that.

Oh my gosh! You just changed my life. I am actually crying right now. i have been reading the thread because this sounds so much like my dd9. I even read the first paragraph to her and she had a look on her face that said "How did you know?" She is an extremely funny, smart, beautiful, kind, and creative child. She has always been "intense' and moody, but over the last few months it's escalated in ways I can't describe. We tried counseling, but they want to medicate her for ADD, and I truly don't believe that's the root of things. She is definitely sensitive--espescially to sound, and although she LOVE WDW, she needs to have breaks, and I have to keep her close as she is often sort of "walking into walls." I think she is just in sensory overload. Since things have gotten wors, and she has bolted from our home a few times, I am increasingly concerned that this will happen at Disney. I don't want to think of what could hapen to her. Your tips were wonderful, and I think I might buy a child locater too, just in case. I'm so glad to hear that I'm not going through this alone. I might PM you for more infor. To the OP...I understand what you are going through. I hope your family has a magical trip.

Thank you so much, and I'm so glad I could help! It's not easy for those of us with sensory issues, but in some ways it's even harder for those who love us; never quite being able to get into our world, or understand why we behave as we do. I'm so, so happy to be able to help anyone 'on the outside' of this world, looking in - the more you know, the more you understand, the better you can help. Please do feel free to PM me any time, and I'll do what I can to help you. Also, if she wants someone to talk to, she's perfectly welcome to PM me herself, or add something to your messages, as you see appropriate.

Also today, another friend gave me the name of a good counselor for myself, so I am going to look into going there. It seems like I am stressed and anxious alot lately and that makes it harder to deal with dd.

That's a wonderful idea, and I think it will do you a lot of good. It will also be good for your family, because when Mommy is happy, everyone is happy; but if she is 'out of action', everything falls to pieces (it's so nice to be needed! ). Don't be afraid to take time for yourself, to recharge your own batteries. Stress and emotional turmoil are not only harmful in themselves, but can also cause physical problem which will make things even harder to deal with.

To all parents of kids who are 'different' in some way, huge hugs and a really big salute; you're all amazing people and you're doing a wonderful job!