Getting nervous about trip (daughter w Asperger's)

[My2CrazyGirls]

I am getting nervous that our dd7 will have meltdowns and make the trip to WDW stressful! Her inflexibility is a major issue and we never know how she will act. Our dd5 is horrible at waiting on line because she won't stop moving and touching people so that is making me nervous too. We have a 15 hour drive as well. We were there over a year ago and it went fairly well but I feel like behaviors have been getting worse! Any encouraging words?

 

[kirstenb1]

Make sure to keep snacks and juice boxes or water bottles with you in the parks. Our 6 yr old with ASD does well if we get there first thing, and hit her "must do" rides before it gets crowded. We eat lunch early, like at 11, again to avoid crowds. She lasts until about 1 or 2 then I take her back to the room to play with her favorite toys we bring down. Later in the day, we take a pool break. Once or twice during the week, she'll want to try going back to the park in the evening. She's learned how to play her sister's Nintendo DS, so I may throw that in the backpack this year, and let her play while waiting in line.

 

[bookwormde]

Relax and take your cues from your kids.

Yes there will likely be some meldowns, but why should that be a major stressor. the last 1/3 of the school year often heightens manefestations and being out of school often lowers them since most of our kids can "do what they enjoy" during the summer so they decompress.

WDW is a good laboratory to watch and learn about triggers where there is no must do's so you can let your child learn to self manage with your gentle guidance.

 

[dyna]

I too was very worried about how 5 yr old Gson was going to do last month it was his 1st visit an a total surprise. 3 days in the parks we got there usually between 11.00 an noon I live offsite, his mommy an daddy did not move as fast in the am as I would have liked.

Gsons 5 an 6 did wonderful the 5 yr old has aspergers along with a mild case of CP an a few other things. NO MELT DOWNS NO NOTHINGS he had the time of his life an just had that look of total amazement the whole visit.

We went the last week of March with spring break which was when his mommy could bring him down she works in the schools too. I knew where the stuff was Gsons would most want to do how to get them there an when even tho we got there late it worked for us. 2 days at MK we stayed till just before fireworks Gpa was tired we headed for home. Neither Gson likes fire workes all that much the noise scares them.

The Studios Gson fell asleep just before Fantasmic the rest of us got to enjoy the show. ALL WENTvery well I was very PLEASED!!!

 

[utterrandomness]

I have aspergers, that I have learned to manage well, overall. I loved both trips I've taken to Disney (one to WDW before I was diagnosed and one to DL 4 years ago). The only problem I had during a recent trip to Disneyland was anxiety about being separated from my group during particularly huge crowds such as during the fireworks. This may be something to look out for. I also second the recommendation to bring something to do in line or even create a game to make waiting in line more interesting.

 

[My2CrazyGirls]

Thanks for the replies. She had a really bad day at school yesterday and a bad morning today. Ughhhhhhhh! Most of the time I just do not "get" her! She gets upset over the most ridiculous things. She does not seem rational. I can try to talk her through things with my wisdom and common sense but she is inflexible. I know I need to be calm, I cannot yell or get upset because that fuels the fire, but that is not always easy. I just need to vent, I feel guilty talking this way about her but this is how she is and it is taking a toll on me. Of course she is very intelligent, has a good sense of humor, is very creative etc and we love her so much!

 

[utterrandomness]

I just need to vent, I feel guilty talking this way about her but this is how she is and it is taking a toll on me. Of course she is very intelligent, has a good sense of humor, is very creative etc and we love her so much!

In my opinion, it's okay to feel frustrated about it, and it's definitely okay to vent/rant. It's no picnic from the other side either and I'm all about equal opportunity.

I hope things get less frustrating for you.

 

[kirstenb1]

Thanks for the replies. She had a really bad day at school yesterday and a bad morning today. Ughhhhhhhh! Most of the time I just do not "get" her! She gets upset over the most ridiculous things. She does not seem rational. I can try to talk her through things with my wisdom and common sense but she is inflexible. I know I need to be calm, I cannot yell or get upset because that fuels the fire, but that is not always easy. I just need to vent, I feel guilty talking this way about her but this is how she is and it is taking a toll on me. Of course she is very intelligent, has a good sense of humor, is very creative etc and we love her so much!

Right there with you!! I try really hard to be patient and not lose my temper. At the same time, I don't want to raise an inflexible child who thinks everyone will be as patient. So I try to really pick my battles. Hang in there. We also have a regular 14 yr old who is a typical teen. Thank goodness there are only 2 of them some days!!! I think if you try to envision the trip through your child's eyes, you guys will have a really nice time.

 

[Luv Bunnies]

I have a 16-year old son w/Asperger's. My best advice is to minimize the talk and explanations. We have to remember that our kids process information slowly. They quickly get frustrated not only because our way of thinking goes against theirs, but because they can't process as quickly as we speak. That can lead to a major meltdown. Like another poster said, it's important to pick your battles. These kids have to learn things that usually comes naturally to us. It's going to be a long process, and it's going to be hit and miss.

Here's an example - We were at a restaurant last night with my parents, my brother and sister. My son has anxiety about seeing people from his old school, where he had a bad experience. He's been in a specialized school for several years, and wants nothing to do with anyone from the old school (even the people who were nice to him - makes no sense, but that's his view). When we got to the restaurant, he remembered that we once saw a girl from his old school there with her dad. He said, "Oh no! Do you think Sarah and her dad will be here?" I said, "I don't see them anywhere. Don't worry." When it was time to order his food, he clammed up. He wanted me to order for him. My mom, brother and sister were encouraging him to order for hmself. They were talking at him from all sides. The waiter was standing there. The pressure was building. My son just looked down and said nothing. I knew he was still anxious about seeing Sarah. It wasn't worth it to me to let his anxiety rise, so I ordered for him. My family, of course, told me I should have made him do it. They don't understand that it's not that simple. You can't just tell him to do something and have him snap to it. His brain doesn't work that way. I don't always order for him. He has learned to do it for himself. However, in that situation, it wasn't worth pushing him. The funny part was that Sarah and her dad did show up when we were eating! She was really nice to my son when they were in school together, and she still asks about him when I see her. Still, he views everyone from that school as bad. I know it's not rational, but it's his thing.

 

[utterrandomness]

As someone who had lots of bad school experiences, I think it's possible that he doesn't want to see anyone from that school because they remind him of the experience, whether or not they were part of the problem. That is a completely reasonable way to feel.

It's unfortunate that your family didn't understand that some things just aren't possible when someone with aspergers is overstimulated and anxious.

ETA: I'm sorry if this comes off as rude, I don't intend it to be. I just wanted to give you some insight into how your son might be processing things.

 

[Luv Bunnies]

As someone who had lots of bad school experiences, I think it's possible that he doesn't want to see anyone from that school because they remind him of the experience, whether or not they were part of the problem. That is a completely reasonable way to feel.

It's unfortunate that your family didn't understand that some things just aren't possible when someone with aspergers is overstimulated and anxious.

ETA: I'm sorry if this comes off as rude, I don't intend it to be. I just wanted to give you some insight into how your son might be processing things.

Thanks. Yes, I totally understand how his school issues have affected his present way of thinking. He wants nothing to do with anyone from that school. It's difficult because our younger son still attends that school, and it's not always possible to keep the older one totally sheltered from it. He did make some improvement earlier this year when he agreed to attend a birthday party that one of his old classmates was also attending. He ended up talking to her and even hugging her goodbye. It was nice to see because, having a disabled sister, this girl was always very understanding and supportive of our son. Still, there are others that he can't bear to be around. I keep trying to tell my mom that his feelings aren't going to change overnight. The memory of running into his old friend Sarah at that same restaurant was causing him anxiety and he clammed up when it came time to order. It wasn't time for a lesson. It was time to help him decrease his anxiety, and my ordering for him helped.

I've gotten to the point where I feel like I totally "get" my son. I know his triggers. I know how he's likely to react in certain situations. I know when to push him and when to back off. We still have our moments, but we make a good team!

 

[utterrandomness]

That's good, it can a tough go when you're always out of sync with one another.

 

[My2CrazyGirls]

That's good, it can a tough go when you're always out of sync with one another.

Yes, I often wonder how my daughter feels since she is always getting in trouble and being yelled at (even though we really try not to!). She just kicked her little sister in the face, so yeah, my husband yelled at her and put her in time out. She doesn't care. She does not show us respect, she doesn't get it at all. We can take things away from her like TV and dessert and she doesn't care (she does care about dessert the most). She rarely plays her Dsi and we all share an ipad and she likes that but if she lost it for a week she wouldn't really mind too much! It all boils down to her inflexibility and her lack of thinking about other peoples feelings. She just doesn't think of others at all.

Sometimes I do get her, like she won't wear an outfit if she doesn't think it matches (according to what she thinks matches....which doesn't always match) and I get that. She won't skip a math problem she doesn't know and come back to it.....I can understand that (even though I think it is bizarre, I do understand that is just her). I understand when she is in a new situation she will shut down a little bit, if she is overwhelmed she will shut down, I get that. I get that she doesn't grasp facial expressions as well as most kids. She doesn't understand when someone is being subtle. She will talk and talk and not know that people are not listening. All that I do get. But I cannot tolerate the disrespect whether it stems from the disability or not

 

[bookwormde]

If you have not yet read Tony Attwood's' "the complete guide to aspergers" it is a good first read to begin to really understand your child. He also has a DVD specific to girls presentations.

Our kids do not have the innate social skills and imperatives which most of the parental and societal expectations are based on.

Expecting her to be and react neurotypically is a recepie for disaster and lifelong damage.

Everything you have described is perfectly understandable (except the kick in the face), but even that has a basis in communication even though obviolsy not acceptable.

Once you learn the basics about aspergers your life and hers will be much easier, and you will begin to have the fun that goes along with our kids amazing gifts.

Bookwormde

 

[treehugnmama]

If you have not yet read Tony Attwood's' "the complete guide to aspergers" it is a good first read to begin to really understand your child. He also has a DVD specific to girls presentations.

Our kids do not have the innate social skills and imperatives which most of the parental and societal expectations are based on.

Expecting her to be and react neurotypically is a recepie for disaster and lifelong damage.

Everything you have described is perfectly understandable (except the kick in the face), but even that has a basis in communication even though obviolsy not acceptable.

Once you learn the basics about aspergers your life and hers will be much easier, and you will begin to have the fun that goes along with our kids amazing gifts.

Bookwormde

I second this book. My dd also 7 just about 8 has aspergers. In times of stress things can tough but I know know why and that helps me a lot. At the beg and end of a school holiday is rough. She gets more inflexible and less has less tolerance for people. The stress of the school year ending is starting and June 29 is last day. She is not worried about being home but rather what sept holds. I try to rember this is happening to her not me! As hard as parenting may be I try to put myself in her shoes. We go to wdw every year and a huge thing for her is the extra loud fireworks and tsm and a few others so we bring safety phones. That helps alot! She doesn't tolerate heat well so we go for rd have lunch at noon and head to the pool. It works for us. I try to minimize dinner adrs. We do them at lunch and take the afternoon evening as it goes It can be tough at times but I find things get better each year. Hang in there!
Now if I could figure out a way for her to be stimulated at school so she is not soooo bored I would be thrilled.