Behavior Challenge Thread

[kymmyk13]

We are excited for the trip, we leave tonight around 6, it me DD19 and DD5, Dh does not like WDW. We shoudl arrive by lunch tomoorw and will be going to MK until dinner and then head to my sister's house, we are staying with her. we have aksherus on Monday, DD5 is so excited about seeing sleeping beauty, DD5 has only been to MK, Me and DD19 has only been to MK & Epcot so Ak and HS will be new to all of us, when I was growing up in Orlando, they only had MK and then EPcot come along by I left before the other 2 and normally only get to visit 1 park each trip due to visting family but this year I told everyone, I have a 6 day pass and you can come to the parks with me if you want to see us .

I keep talking to DD5 about behavior and what is expected of her, and keeping her informated of what is going to happen everday, she does not like surprises. I will give a full report when we get back.

 

[bookwormde]

Back from the beach, it is amazing what a week at the beach with extended family that "get it" can do for anxiety levels.

bookwormde

 

[kirstenb1]

Grace, your daughter is gorgeous---thanks for sharing the great pix!! Kymmyk, I hope you're having a great time. Bookwormde, the beach is Zoe's favorite vacation. As a matter of fact, the WDW trip from hell last year almost convinced me to book our DVC at HHI every year afterwards, and skip Orlando!!!

However....drum roll please....Thanks to all the advice given by fellow Dis'rs on this board, we just came back from a fantastic WDW trip!!!! We showed Zoe continuous Youtube videos of rides for 2 weeks before we left. DH loaded her MP3 player with episodes of Scooby Doo, Haunted Mansion movie, and Tower of Terror movie. She used her headphones with this everynight to calm her down back in our room. She cannot fall to sleep with anyone else in teh room (she gets truly manic crazy, and will stay up for hours shrieking at the top of her voice), so since we have DVC, we had 2 bedrooms. However, if we didn't have DVC, we would stay offsite, and rent a house. Just my 2 cents for anyone else with sleep issues.

Finally, we bought 10 day, no expire park hoppers. We got to each park at opening time every morning. The last morning we left at 11:30 am. Yes, you read that right. By our 4th day there, Zoe was done. We did about 5 rides at the MK, and went back to the room. DH and our older dd took off to other parks. Frankly, my expectations we so low, even this day counted as a huge victory. She was able to verbalize she was done, and wanted to go to the pool. No meltdowns at any park. We constantly asked if she was okay, and if she said she was done, we called it a day.

YOu all gave me such great suggestions. I thank you from the bottom of my heart!! I love you guys!!

 

[GraceLuvsWDW]

Bookwormde, I would really like your perspective on some things I have been going through with dd lately. I have written it out exhaustively on WP so I'd like to send you a link to that thread. I'll PM you.

Thanks!

Kirstenb1, glad to hear you had a successful trip!

 

[bookwormde]

GraceluvsWDW,

Sent you a PM, Take a deep breath, regroup and move forward, your daughter is a gift to the world and all the work will be worth it in the end.

bookwormde

 

[koolaidmoms]

Kirsten - So glad your trip went so well!!!

Bookwormde- Can you share your family? That is sometimes the most painful, at least for us. The others think they have the "answers" for our DS and try to discipline or show us how it is done. We stand there and tell them he doesn't understand what you are doing or saying but they do it anyway.

I want a shirt that says it is not a lack of disciplining that made my DS this way it is Autism. But, even then I don't think they would get it.

 

[GraceLuvsWDW]

Thanks for the insight Bookwormde. For everyone else, I'd be happy to send a link, I just feel some of it may be too intense for discussion on a board not specialized in Autism. If anyone is looking for such a board where everyone there "gets it" let me know and I'll pm you.

My Disney obsession is taking a back seat for a while while I get dd back to "normal" and decompressed after the anxiety produced from the lack of support at school. These next months are back to the fire fight with the school/district/and even state if that's where I need to go!

My family is getting better about understanding and support-at least my mom is. Curiously, my brother (the undiagnosed Aspie) is very, very hard on my dd.

I love summer! My dd sat through her first full length film yesterday: Toy Story 3. This is such a reason to celebrate for me!!! No counting or (much) fidgeting!

Kirstenb1, our trip was very much the same as yours: to the park in the am then leaving when dd was "done" and relaxing at the resort for the rest of the afternoon/evening. It's nice to do this without the pressure of needing to see/ride everything and it's more possible when you go to WDW more often. Glad to hear it worked out well for you!

 

[bookwormde]

I know I am lucky to have a supportive family on both sides, I think that since I am a "open" apsie it helps a lot in everyone having a broader focus.

bookwormde

 

[kirstenb1]

Grace, I'm glad you guys got to go to ToyStory 3, and got through the whole movie!! I'm not brave enough to try this with Zoe yet. Our older dd was 4 when Peter Pan 2 came out, and we took her to it. I'm thinking maybe when Zoe is 6 or 7.

We've been gone, so maybe you posted already...did you find a childcare option for Grace?

Today is our first full day back home. Zoe's had a mixed day. DH bought one of those 30" tall inflatable pools for the yard. The girls had fun in it earlier, but Zoe has been very grumpy since I told her she had to get out (she'll sunburn), and could go back in after dinner.


Koolaids Mom, sorry you're not going back to WDW this year. I hope you guys have lots of fun closer to home this summer!!

 

[GraceLuvsWDW]

Anyone going to any of the Austim/Asperger's Superconferences? I am going to go. Dallas is the closest to me but the Denver looks the most interesting. I am seriously considering using my Dec Disney trip $$ to go to this conference.

http://www.fhautism.com/Conferences/DenverAutismAspergersSuperConference/tabid/222/Default.aspx

It would be nice for some of us to meet up at a conference like this. I may just be budget minded and go to the Dallas one in Oct.

 

[bookwormde]

I think I would wait to see who else is added to Dallas

Even seeing 3 major presenters is great.

bookwormde

 

[GraceLuvsWDW]

Just had to share a celebratory moment:

I took dd to a different dentist today. You all know about the past dental experiences she has had. Anyway I didn't have high expectations, just wanted to go in for a little meet n greet and get to know the dentist-to build some rapport and comfort.

Anyway the dentist was SO GOOD with dd! He stayed with her one on one in her own private room and was able to get xrays, cleaning (yes with the vibrating cleaning tool!) and apply flouride. I was almost in tears at how well they got along. Anyway, he pulled me to the side and said his daughter has Asperger's also and so he "gets" their issues. I hugged him and thanked him! We talked a little about OT and each of our kids struggles and strengths.

I am just so happy this evening! It CAN be done! It CAN be done! I am sitting here wondering what other things can be made easier just by dealing with people who "get" it.

I had some pixie dust sprinkled on us today!

 

[bookwormde]

Imagine how great she would do if everyone in her world "got her".

For our NYers your health care insurance parity law for Autism passed and is headed for the Governor

bookwormde

 

[C&G'sMama]

Just had to share a celebratory moment:

I took dd to a different dentist today. You all know about the past dental experiences she has had. Anyway I didn't have high expectations, just wanted to go in for a little meet n greet and get to know the dentist-to build some rapport and comfort.

Anyway the dentist was SO GOOD with dd! He stayed with her one on one in her own private room and was able to get xrays, cleaning (yes with the vibrating cleaning tool!) and apply flouride. I was almost in tears at how well they got along. Anyway, he pulled me to the side and said his daughter has Asperger's also and so he "gets" their issues. I hugged him and thanked him! We talked a little about OT and each of our kids struggles and strengths.

I am just so happy this evening! It CAN be done! It CAN be done! I am sitting here wondering what other things can be made easier just by dealing with people who "get" it.

I had some pixie dust sprinkled on us today!

That is AWESOME Thank you for sharing.

 

[kirstenb1]

Grace, I'm so glad for you!! It shows what your dd can do---great victory!!!

 

[C&G'sMama]

We had a glimmer moment the other day. Our friend took her DD and our DS to see Shrek. Her DD had Silly Bandz and DS wanted to trade but she didn't want to. Her mom told her to give DS one and she did (under protest) DS looked at her and said "I can see you're upset and don't really want to give it to me, it's okay" and he handed it back to her. Wow..

 

[kirstenb1]

C and G's Mama, that's terrific!! He is much more sensitive than my nt nephews!!

 

[bookwormde]

It is funny, that while our kids "miss" a lot of the cues that trigger empathic reactions, when they do "get it" they are much more likely to take actions or sacrifice than NT kids, it is one of the great contradictions with our kids.
bookwormde

 

[GraceLuvsWDW]

C&G'sMama, that is such a sweet story! Good for your son! Is he still doing well on the GF/CF diet?

 

[C&G'sMama]

C&G'sMama, that is such a sweet story! Good for your son! Is he still doing well on the GF/CF diet?

Yes he's still GF while I admit we slack a little on the CF. I do believe the GF makes a difference. We made a flag cake with blueberries and strawberries yesterday and ordered a cake for him from the GF Vegan bakery. We added blue berries and strawberries to his cake.

We still are having anger issues. But overall he's definitely better. He's not noise sensitive so we don't have issues on the 4th and it seems like there were more home fireworks than usual this year.