Disney CRuise & Disney Magic OUTSIDE the World!

tinkslite

Mouseketeer
Joined
May 13, 2008
Messages
318
I will start this by saying we are a family of 5, with 3 ADD/ADHD men/boys and one daughter with autism. It is my daughter/son about whom I am writing.
We were foster parents for about 6 years, early in our marriage (17 years, as of today:love:), and our daughter came to us through that service. She was nearly 4 when she arrived in our home. She'd been brutally abused her entire short life, and did NOT trust adults at all. In fact, she was a bit feral. She had to learn what silverware was used for, and how playground swings worked. She barely spoke (and when she did the only words she knew would make a sailor blush). She bonded with her brother, of the same age, nearly immediately and they quickly became fast friends. He was her protector and often her voice, as i watched in wonder as these two who were not of the same biology started to develop a sort of "twin speak." She soon decided that if bro. was okay with something, then that thing was ok. The only thing she ever disagreed with him on, green peas. He loves them, she can't stand them.

She learned to speak pretty rapidly but was always delayed in other ways. School was nearly impossible. She never seemed to understand why other kids would "pretend." It reminded me of that scene in Miracle on 34th street where Santa is asking why Susan didn't pretend to be a Monkey when other children were playing a game of Zoo; Susan replied, "because I am NOT a monkey! I'm a little girl." Duh! Jessi was alot like that.....Only she could not express it so eloquently (sp?). She rarely smiled, usually had a flat expression. Often she would seem deaf, as she would not respond to sounds. or pain. or a myriad of other things. We had her tested again and again. All said she was "learning disabled" but couldn't describe how, or that she was retarded (right, she could completely dress herself at age 3, buttons tying, and all after years of neglect but she is retarded).

Fast forward to age 12 (almost 13). She has been having hours long meltdowns every day (no i'm not exagerating) every day after school for 6 weeks. We had just entered middle school where there are 6 classes, 6 teachers and 5 times a day she must maneuver crowded noisy hallways to switch classes. Special Ed. services are overworked here and will offer nothing much to help....
I take her to a pediatric psychiatrist. I explain that I NEED a diagnosis that makes sense so that I may help her. I need the tantrums to subside! HELP ME! And finally , he did. After sitting with us and getting a history, observing my daughter, and hearing from her teachers, he told me that my lovely daughter has Aspergers' Syndrome (a form of autism) and PTSD (this I knew) and that the crowded hallways and constant changes were overstimulating her and kicking in her PTSD.
I immediately found an online charter school and she began to attend classes in our living room from a laptop. The tantrums subsided from every day to once every 4-6 weeks almost immediately.
Now, one thing our family has done over the years is to vacation at Disney. It is one place where the magic overtakes her and we can see genuine smiles. She actually uses imagination and believes!!!! Never happens at home! She has a younger brother who lived his first 6 years in and out of the hospital with special medical needs and that started us seeking disney out for "breaks from our reality." They took such good care of our little guy.

Last year, during the "recession depression" my huband's small company got audited.The IRS took over our lives/income for 4 months. We were living off of our small retirement account (not available anymore). We got through it, but had to let several things go, due to the hardship on our finances. No more music lessons, she had to quit regular swimming lessons, and we considered sending her back into regular school so that I could take a job. Thankfully, it didn't come to that. But things were/are extremely tight.

As the IRS thing closed my hubby and partner were offered a buyout from a larger co. They took it and now hubby is VP of sales for the new larger co. and travelling almost constantly. Hard on Jessi, Daddy is her favorite "safe" person. Safe because she feels safer when he is home. He and she set up a daily ritual wherein he calls her every night at 9pm our time, no matter what!!

Now that I have laid that groundwork I will tell you some of the "disney magic" that spilled into our daily lives/world this past 6 months. We call any "going above and beyond" kinds of acts disney magic, just to be clear.

During the time that we were actually having the IRS in our business and personal finances, my kids were forced to give up every extracurricular activity that cost any money as we were living from our retirement accounts as our personal and business accounts were our of our control. My youngest son is a competitive gymnast, my older son competes in Trampoline and Tumbling. When I pulled his coach aside and explained that we were having a rough time financially, she refused to allow me to pull him off his team. She told me he was a delight and help to all his coaches and that we should keep bringing him in and pay when we got back on our feet. When we did, I went to her to work our a payment plan on top of regular tuition, to make up for the undpaid months. She said, no. His help with the younger athletes in practice and my volunteer time with booster club was enough. Just go back to paying the regular tuition. This meant my other 2 kids could take up their extracurricular stuff that much sooner. (:tinker:
Then, he qualified for a regional meet 2 states away. We could not afford the nearly 300 bucks to send him w/coach. We have always gone to meets with our sons, but this time there was no $$ available, as we were tapped out from the IRS months. A friend whose season had just ended, told us that there was $300 in her account with boosters and she would transfer it to him so that he could go to the meet! She did so and has refused any discussion of repayment.....We had a frequent flyer ticket for his flight, he shared a room with the coaches kids, and all I had to give him $$ for was food. The extra good news: He qualified for the national competition and dad's co. headquarters is located in the city in which that takes place-He can go!! Hooray!:tink:
Magic number 3 happened recently, as I said my hubby's new job requires tons and tons of travel (we are lucky to get him a day or 2 each week). So we are missing time with him. I had explained to kidlets that we will not be taking a dis vacation in the next couple of years as we build a savings/retirement fund and look forward to older sons college. They all said they understood that (daughter was deeply disappointed, but not meltdown from it). Then the pres of co. told hubby that he wants to make sure we get some time w/ hubby this year; how would we like to go on a cruise? A DISNEY cruise!!!! Would we ever!!! We will be taking a 3 day on the Dream in Sept. !!!On concierge level no less!!! :tinker::tinker:
So the pixies have been flying around my family, even during this very special time. I am hoping that my daughter will be able to take part in some of the younger kids activities onboard the ship (she doesn't really operate like a 16 year old). I am happy that we get to go. This Spring we also found a Special Needs Cheerleading team:cheer2::cheer2::cheer2: and she started with them last week (no charge to special needs cheerleaders). She is really enjoying that. She wants to try some of the Special Olympics sports that are offered in our area, too. Also no charge to athletes. This is so amazing for us! Not something we knew was available. It is helping her to feel like she has a place in the world, that she CAN fit!
Ok, I suppose that was a long rant. Just felt like sharing. I will post re. our cruise after it takes place. i am hoping they will accomodate for sons special diet and daughters needs well........and that no one will think it odd that our 16 year old wants the Princess autographs and to bake cookies in the lab!....
Can't wait! :wizard:
 
That is so cool!! I'm glad that you have a lot of angels looking out for you all!
 
WOW thanks for sharing . It is wonderful to hear about some MAGIC happen outside of the most magical place on earth!!
 
I have been on 2 disney cruises and the staff hve been amazing on both. the first one my daughter was 6 but eating only pureed foods our servers found this out abd would bring me the menue for the next night to dinner every night and I would circle what I wanted for my daughter for dinner then next night. when i got to my table the next night her dinner was sitting there piping hot but i was able to feed her before my food came so I was able to also eat my food hot. one night i didn't get done feeding her when my dinner came out my server cut up my food and gave me a bite again so it wold be hot. they are so awesome and have a lot of special children and teens and adults they really go above and beyond. we are going again in may 2012. hope you have a great time
 

Hooray. :cool1:
Sounds lke OP deserves a Disney Cruise. CMs are so attentive to specials needs, excellent kids clubs, teens areas, and 'adults only' areas, so you can spend some time wth your DH. If folks think it's odd that a 16-yr old wants autographs, who cares what they think. DD 20 got autographs [and she's not family member with special needs :goodvibes]
 
I actually have a really hard time with thickening my skin to the "looks" involved w/ having a 16 year old who really isn't (developmentally). I know there is no need to apologize to people who don't get what is going on (and who, as hubby points out, we are unlikely ever to encounter again), but I definitely have a hard time with the "bad parent" rap. :mad:
We've had so many professionals, most who misdiagnosed or refused to diagnose, imply or outright tell us that her "anxiety" issues were me or us!!! :scared1: It got so that I was afraid to take her to the people who are supposed to "help.":headache:

She really LOVES disney, and that is a blessing for me. She will try new things there, that I could NEVER get her to try at home. :wizard:

She is a HUGE tinkerbell fan (her nickname in fact). When she came to us, she wouldn't speak much (like Tink). BUT she got her point across through motioning, stamping, clapping:banana:.....lol. One day, in the grocery store, she wanted a candy bar and kept pointing to the candy rack and clapping her hands. finally I said, "No, Jess, not today.":sad2: and she placed both hands on hips and stamped her little foot! BOUNCE went the little blonde ponytail! She has been Tinkerbell ever since,:tinker: and collects Tinkerbell items of all sorts.!
Last week, we saw a DISign tee shirt that had a pic of Stitch on it's front and it read, "Maybe Stitch had autism too, that would explain alot!" Well, we both loved that shirt, so I made one for her. Now she is liking Stitch about as much as she likes Tinkerbell. Her little bro (DS13) does voice impressions, and Stitch is one of his best! So, he has been doing Stitch ALOT of late...He told me he is afraid his voice will never be the same after this phase!! ROFL. Good brother.

I am counting the days until I cruise away with my family. I am hoping (praying) for the teen centers/youth programs to adapt to her enuf that I can get a "caregiver break" (respite)......She is unlikely to be in any way disruptive. She is more likely to be quiet and withdrawn from other kiddos, perhaps to attach herself to a counselor (and only want that counselor).... or choose certain activities only (cooking or something).....So, I hope that they can adapt.....
We are currently in IEP 3 year rewrite HELL!!!! It feels like it will never end and she was due in April! The schooling is often a much bigger headache than the rest combined! and because she will only start High School this fall, I have one more rewrite before schooling is done! :headache:
Anyway, thanks for the space to let go of some of it.:)
 
Thank you so much for sharing. I am so happy for your family! Please come back adn post some follow up after your trip. I'd love to hear more about your great adventure at sea. :)
 




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