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Old 06-10-2014, 10:01 AM   #16
greenjellybean
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Thank you so much!!

I really appreciate all of the advice!!! I'm sorry it's taken me so long to respond. Had a crazy week with the school year ending week before last and had friends spend the night the following two (the girls had friends spend the night... I didn't... ). Then this weekend was spent getting both of them packed and ready to go off to Camp Kemo.

As you can imagine, Savannah REALLY didn't want to go. It's funny. I haven't really been worried about Sophie, who has chemo this week. I've been worried about Savannah. It's a BIG deal to take her out of her comfort zone like this and plop her down somewhere where she really doesn't know too many people and in a place she's never been before. I'm terrified I made the wrong decision to send her and it will be no fun because the stress will be too taxing.

I made sure the staff were aware that this may not be just a case of nerves, but that may not be enough. These are wonderful people, most of whom are in the medical field or childhood cancer survivors themselves, but that doesn't mean they are prepared to deal with a child with Asperger's. Savannah is high functioning and has learned coping skill because she's had to, the same reason we all do. But the momma in me still worries.


She looks so miserable!! The good news is she climbed onto the bus right after I took this and she sat down next to a girl, looked up and gave me the brightest smile. I sincerely hope with everything in me that she didn't somehow manage to fake that and it was genuine!
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WE HAVE A COUNTDOWN! The girls are going to be SOOOO excited!!!!

DH (Scott) Me (Jenni) DD (Savannah age 11) Wish kid (Sophie age 8) or Depending on her mood.

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Old 06-16-2014, 04:50 AM   #17
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Just back from 9 days at WDW

If by professional you mean paid, no all my work is volunteer, but includes advocacy including legislative and education of educators and other professionals about Aspergers/Autism and disabilities in general.

I think we have the same approach or encouraging our kids to push their boundaries. We only seam to get a new food every year or 2 despite lots of trying.

We have worked very hard to make our son self aware of his differences including his gifts and to be a strong self advocate, so sometimes it is a tough balance between encouraging and respecting his self advocacy.
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Old 06-16-2014, 11:52 AM   #18
Agent1964fem
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My son is now 23 and was diagnosed with Aspergers . At age 2. We have been to Disney 5 times so far. First visit was 2003.
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Old 06-17-2014, 11:08 PM   #19
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Originally Posted by bookwormde View Post
Just back from 9 days at WDW

If by professional you mean paid, no all my work is volunteer, but includes advocacy including legislative and education of educators and other professionals about Aspergers/Autism and disabilities in general.

I think we have the same approach or encouraging our kids to push their boundaries. We only seam to get a new food every year or 2 despite lots of trying.

We have worked very hard to make our son self aware of his differences including his gifts and to be a strong self advocate, so sometimes it is a tough balance between encouraging and respecting his self advocacy.
I have to admit, I'm a little jealous. Nine fabulous days at Disney! *SIGH*
Hope it was a wonderful as it sounds!

I suppose I need to get rid of the word Asperger's, don't I? I understand the phrase itself is being done away with and the 'new' title is Autism Spectrum Disorder.

Whatever you do, whether on a professional or volunteer basis, it's clear you are very knowledgeable and I'm very grateful for the input. Sounds like you've worked very hard to provide your son with the best tools and coping mechanisms at his disposal and I'm not sure you can do more than that. After all, that's every mom and dad's goal.

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Originally Posted by Agent1964fem View Post
My son is now 23 and was diagnosed with Aspergers . At age 2. We have been to Disney 5 times so far. First visit was 2003.
Sounds like lots of people have managed to make Disney trips and all of the excitement and change of routine work.
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WE HAVE A COUNTDOWN! The girls are going to be SOOOO excited!!!!

DH (Scott) Me (Jenni) DD (Savannah age 11) Wish kid (Sophie age 8) or Depending on her mood.

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Old 06-17-2014, 11:26 PM   #20
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For anyone that wants to know, Savannah did GREAT at Camp Kemo! She got along with her cabin mates and they were kind and inclusive in return. It's VERY clear that Savannah is not at the same level of maturity as other children her age and one of the ways it's very evident is in her social skills. She only wants to talk about what she wants to talk about and is very resistant to change topics. They accepted her and didn't treat her any different and she was thrilled. She STILL hasn't quit talking about it. Warms my heart more than I can say.

I'll quit bothering ya'll soon and probably go back to making updates in the thread about Sophie's Make A Wish (I'm using it as a 'journal') but want to put out there that I'm surprised at how difficult this is for me. I've ALWAYS known something was different with Savannah and I should be thrilled that naming something is the first step in addressing the issues that so desperately need to be addressed. But I'm really struggling with this. I think my fear is that with a diagnosis of ASD, there will never be any improvement in behavior issues. That she'll always struggle in a way that most other people will either never really believe or never fully grasp. It was that way before with ADHD and Savannah is still the precious child who is smart, funny and beautiful and artistic. In which case, what is it about hearing Asperger's or Autism Spectrum Disorder that has my heart hurting? Just the label, maybe? Is it something that I should share with others? Certainly teachers, but should we be open or private? I don't have any shame and I certainly don't want her to either, but neither do I want to use it as an excuse for antisocial behavior.

We are only beginning her assessment and her therapist has been very careful to avoid automatically assuming anything, but based on her candid conversations with me, it's clear that she suspects the assessment will only confirm her suspension. Either way, it's clear I will get the answers to these questions and more as we go, I suppose.

Again, thank you so very much for everyone's input and advice! I'm very grateful!

Savannah saying goodbye to her cabin mates, all of whom seemed to genuinely like her, even if they all admitted that they were REALLY tired of hearing about cats.
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WE HAVE A COUNTDOWN! The girls are going to be SOOOO excited!!!!

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Old 06-18-2014, 06:51 AM   #21
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Quote:
Originally Posted by greenjellybean View Post
... Savannah is still the precious child who is smart, funny and beautiful and artistic. ...
greenjellybean -- she sounds like an awesome kid and doing just fine! You have it right above, she's the same kid she was before a diagnosis. Don't get hung-up on the label. She is who she is, regardless of any diagnosis or no diagnosis, and she'll get through life in her own way if you just give her the time she needs to figure that out. In some ways, she sounds very similar to my DD.

I'm so glad she enjoyed camp!
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Old 06-24-2014, 08:52 AM   #22
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greenjellybean -- she sounds like an awesome kid and doing just fine! You have it right above, she's the same kid she was before a diagnosis. Don't get hung-up on the label. She is who she is, regardless of any diagnosis or no diagnosis, and she'll get through life in her own way if you just give her the time she needs to figure that out. In some ways, she sounds very similar to my DD.

I'm so glad she enjoyed camp!
Thank you lanejudy! She is an awesome kid! And you are absolutely right, she is who she is irregardless of any label and that's just fine. How old is your DD?

I'm actually doing much better now. As much as I love her, Savannah, because of her idiosyncrasies could be very hard to please and we were often frustrated in all of our efforts to encourage expanding her horizons. She would often fight us on the smallest of requests and has been like that from day one. She has been, especially for the last several years, far more unpleasant than anything else. She has been miserable and my best efforts have failed and I have missed enjoying my child terribly.

So when we started therapy and her therapist suggests that allot of this may have to do with a condition that is permanent, I was so disappointed. But Danielle (the therapist) gave DH and I lots of behavior modification and tools to use and I'm seeing a difference!! This past week especially, I've really seen a change in her. Our home is more peaceful now! Not all the time...I'm afraid I blew up Sunday night ...lack of sleep and stress among other things finally caught up with me (after a good cry and lots of apologies on my part and we are good). And I'm getting to enjoy her company!!!

And the best thing happened yesterday! Savannah looked at me and said, "You know, Mom, I used to be so angry about everything. But I don't feel so angry anymore. I don't feel like I have to fight you. It's nice, isn't it?" That meant the world to me!
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WE HAVE A COUNTDOWN! The girls are going to be SOOOO excited!!!!

DH (Scott) Me (Jenni) DD (Savannah age 11) Wish kid (Sophie age 8) or Depending on her mood.

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Old 06-24-2014, 02:40 PM   #23
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One thing that could have contributed to the change in her behavior before the therapy is hormones. Not only are there the "normal" adolescent behavior changes, but they can also magnify the effects of all sorts of medical conditions. The good news: it's temporary. The bad news: it'll probably take a few years

A permanent condition does not mean that the presentation or ability to function will stay the same. I think that can be a distinction that many people don't realize until after they/their child have been diagnosed a while. An example that might be easier to imagine is a kid with cerebral palsy (CP). CP is permanent and your "type" of CP doesn't change, but with physical therapy and other treatments, many people with CP are able to walk and do other things they couldn't do when diagnosed.

I'm glad Savannah is happy with the changes so far. Don't feel, however, that you have to "fix" every single indicator for Asperger's. Not only are there symptoms that are neutral, but there are ones that can be very beneficial down the road. Plus, some of it is probably just personality and you don't sound like you want to change who she is. If she feels she can, I suspect she'll be able to tell you if there are things that she doesn't want to change that really aren't effecting anyone negatively. I know too many adults with autism/Aspergers who found some of the therapies they were forced through, for things that weren't causing any problems past maybe "looking different", traumatic (which isn't good in general and could end up magnifying whatever behavior is supposed to change). I suspect most of the parents involved didn't even know how their kids felt about what they were going through. Clearly what you're doing now is positive for Savannah, but it's worth keeping an eye out in case a treatment down the road doesn't help her be happy.
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Old 06-24-2014, 10:56 PM   #24
lepidop
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It may be helpful to let go of thinking of the diagnosis as a curse, and instead realize that you have had a door open up for you. Your child is the same child, regardless if she has a diagnostic code on her chart. However, with a diagnosis, you are able to access therapies that will help her with the things she has struggled with, and give her tools that she'll use to have an easier time of navigating through life.
With my kids, I've talked about how everyone has things that they find easy and things that they find difficult. With aspergers, one of the challenges is to find ways to make the difficult things less of a struggle. We can find alternate ways of reaching the goal, and then we have another tool in our toolbox.
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Old 06-25-2014, 04:00 PM   #25
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Quote:
Originally Posted by greenjellybean View Post
Routine is important. She can go outside of her routine now, but was very challenging if we changed anything at a younger age. Surprises are very anxiety provoking. She is going to Camp Kemo with her sister next week and I'm doing everything I can think of now to prepare her for what she might expect.
To keep the surprise-factor down, one thing I do for my son (high functioning autism - very similar to Asperger's) before we go to a theme park is watch videos of the rides on YouTube (you can find video of just about any ride on YouTube). This way, he can see or I can tell him about the ride before we get on... especially useful for the surprising parts. For example, at Epcot, the ride Test Track has a part where you go in the dark, and a loud horn and two headlights appear right in front of you (like you are going to collide). The car then jerks to the right, and all is well. It really helps that he knew this ahead of time (he would just close his eyes and cover his ears when it was about to happen).

Quote:
Originally Posted by greenjellybean View Post
Is it something that I should share with others? Certainly teachers, but should we be open or private? I don't have any shame and I certainly don't want her to either, but neither do I want to use it as an excuse for antisocial behavior.
There is no wrong answer here. You should share with others if you and your daughter are comfortable with it. For us, we have been very open with everyone, and I have never regretted it.

Here is a link to a blog post my wife wrote a couple years ago. It might help with some of your concerns/worries/outlook:
The Key

Last edited by opusone; 07-03-2014 at 03:19 PM.
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Old 06-26-2014, 06:28 PM   #26
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Chiming In with preparing as much as possible. My DS16 is on the spectrum and we've made 4 trips to WDW since he was 5. The last few times we also prepared him by YouTube videos, and we stay at the same hotel and almost always eat at the same restaurants, maybe a little boring for the rest of the family but if it keeps the peace it's ok.

But no matter how much you prepare there's always the chance of an unexpected melt-down...DS's worst melt-down ever was 3 years ago at Crystal Palace - when the orange juice had pulp in it ! Sounds odd, but at home we buy pulp free because of the texture issues, and we didn't think to ask! The rest of that day was spent in the hotel watching movies.
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Old 06-28-2014, 04:46 PM   #27
greenjellybean
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Quote:
Originally Posted by WheeledTraveler View Post
One thing that could have contributed to the change in her behavior before the therapy is hormones. Not only are there the "normal" adolescent behavior changes, but they can also magnify the effects of all sorts of medical conditions. The good news: it's temporary. The bad news: it'll probably take a few years

A permanent condition does not mean that the presentation or ability to function will stay the same. I think that can be a distinction that many people don't realize until after they/their child have been diagnosed a while. An example that might be easier to imagine is a kid with cerebral palsy (CP). CP is permanent and your "type" of CP doesn't change, but with physical therapy and other treatments, many people with CP are able to walk and do other things they couldn't do when diagnosed.

I'm glad Savannah is happy with the changes so far. Don't feel, however, that you have to "fix" every single indicator for Asperger's. Not only are there symptoms that are neutral, but there are ones that can be very beneficial down the road. Plus, some of it is probably just personality and you don't sound like you want to change who she is. If she feels she can, I suspect she'll be able to tell you if there are things that she doesn't want to change that really aren't effecting anyone negatively. I know too many adults with autism/Aspergers who found some of the therapies they were forced through, for things that weren't causing any problems past maybe "looking different", traumatic (which isn't good in general and could end up magnifying whatever behavior is supposed to change). I suspect most of the parents involved didn't even know how their kids felt about what they were going through. Clearly what you're doing now is positive for Savannah, but it's worth keeping an eye out in case a treatment down the road doesn't help her be happy.
Ugh!!! The dreaded hormones! I fear they are indeed present and causing their own, unique brand of chaos. I agree, they do make other issues more difficult and dramatic. And I especially appreciate the tip about not feeling like we have to change everything. I don't want to. She's a great kid! I just want us to provide her with every advantage. It seems to affect her socially the most, and that needs to be dealt with. But her obsessive interests don't really concern me as much as social cues and the such.


Quote:
Originally Posted by lepidop View Post
It may be helpful to let go of thinking of the diagnosis as a curse, and instead realize that you have had a door open up for you. Your child is the same child, regardless if she has a diagnostic code on her chart. However, with a diagnosis, you are able to access therapies that will help her with the things she has struggled with, and give her tools that she'll use to have an easier time of navigating through life.
With my kids, I've talked about how everyone has things that they find easy and things that they find difficult. With aspergers, one of the challenges is to find ways to make the difficult things less of a struggle. We can find alternate ways of reaching the goal, and then we have another tool in our toolbox.
Very well worded!! And that's really all I want for her. I want her to have all the tools available at her disposal and I want her to learn how to use those tools.
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WE HAVE A COUNTDOWN! The girls are going to be SOOOO excited!!!!

DH (Scott) Me (Jenni) DD (Savannah age 11) Wish kid (Sophie age 8) or Depending on her mood.

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Old 06-28-2014, 04:48 PM   #28
greenjellybean
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Originally Posted by opusone View Post
To keep the surprise-factor down, one thing I do for my son (high functioning autism - very similar to Asperger's) before we go to a theme park is watch videos of the rides on YouTube (you can find video of just about any ride on YouTube). This way, he can see or I can tell him about the ride before we get on... especially useful for the surprising parts. For example, at Epcot, the ride Test Track has a part where you go in the dark, and a loud horn and two headlights appear right in front of you (like you are going to collide). The car then jerks to the right, and all is well. It really helps that he knew this ahead of time (he would just close his eyes and cover his ears when it was about to happen).



There is no wrong answer here. You should share with others if you and your daughter are comfortable with it. For us, we have been very open with everyone, and I have never regretted it.

Here is a link to a blog post my wife wrote a couple years ago. It might help with some of your concerns/worries/outlook:
The Key
Quote:
Originally Posted by deb010305 View Post
Chiming In with preparing as much as possible. My DS16 is on the spectrum and we've made 4 trips to WDW since he was 5. The last few times we also prepared him by YouTube videos, and we stay at the same hotel and almost always eat at the same restaurants, maybe a little boring for the rest of the family but if it keeps the peace it's ok.

But no matter how much you prepare there's always the chance of an unexpected melt-down...DS's worst melt-down ever was 3 years ago at Crystal Palace - when the orange juice had pulp in it ! Sounds odd, but at home we buy pulp free because of the texture issues, and we didn't think to ask! The rest of that day was spent in the hotel watching movies.

The YouTube videos are amazing!!! And I agree that they can be so helpful in making her prepared. We've been watching them for precisely that reason (well that, and it's just fun to watch).
__________________
WE HAVE A COUNTDOWN! The girls are going to be SOOOO excited!!!!

DH (Scott) Me (Jenni) DD (Savannah age 11) Wish kid (Sophie age 8) or Depending on her mood.

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Old 06-28-2014, 10:36 PM   #29
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Here is a link to a blog post my wife wrote a couple years ago. It might help with some of your concerns/worries/outlook:
The Key[/QUOTE]

I cannot believe I almost forgot to mention this. Thank you so much for sharing the link! Incredibly well written. Not only that, but it was clearly written with her heart wide open and I'm so grateful that she took the chance to put it online. There was SO much there that directly addressed issues and thoughts I personally have been dealing with and I really needed to hear it from someone who is and has been there. Please tell your wife thank you!!
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WE HAVE A COUNTDOWN! The girls are going to be SOOOO excited!!!!

DH (Scott) Me (Jenni) DD (Savannah age 11) Wish kid (Sophie age 8) or Depending on her mood.

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Old 06-29-2014, 04:17 PM   #30
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I cannot believe I almost forgot to mention this. Thank you so much for sharing the link! Incredibly well written. Not only that, but it was clearly written with her heart wide open and I'm so grateful that she took the chance to put it online. There was SO much there that directly addressed issues and thoughts I personally have been dealing with and I really needed to hear it from someone who is and has been there. Please tell your wife thank you!!
So, I showed my wife your post above to thank her, and the funny part is that she completely forgot about her own blog post. Now, hopefully I can convince her to post some of her other ideas/thoughts/reflections. Anyway, I wanted you to know that I did pass on your thanks.

Any more news on your MAW trip?
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