Aspergers daughter and allergy son at disney

[tinkslite]

I am really really lucky because really my daughters needs could be so much worse. But some days I just wish I could disappear. She is 13 and she has (as close as we can guess, as the professionals seem never to agree) aspergers syndrome. She doesn't "look disabled" as I have been told time and again, and so when she completely loses it screaming and tantruming like a 2 year old. Or screams "I hate you" repeatedly. Or breaks things when she's mad. People think we just have a brat. But she is also sweet and organized and detail oriented. Her bedroom is the tidiest in the house. She always knows where the car keys or the lost library book is hiding. I love that she loves Disneyland as much as I do. But our vacations are overwhelming to her. Her routines are so important to her, and vacations are just too unpredictable. So tantrums are a fact of our vacations.
On top of all of this she has a little brother with respiratory difficulty complicated by a myriad of allergies (foods, meds and environmental). Because a breathing treatment and blue ish tone to your lips a couple times a day is a "visible" disability, he tends to get sympathy where she gets scorn and rude comments.
Any thoughts?

 

[bookwormde]

My suggestion for the parks is that at this point maybe you should go for a mother daughter visit so she can try it at her “pace” and so you can focus on listening to her and needs only for 1 visit.

With the situation in general I could not tell how well read you are on the subject. If you have not read at least 4-6 of the major works on Aseprgers then I would start there. I always recommend Tony Attwood, The complete Guide to Aseprgers C2007 (available on Amazon for about $25). Also, has she recently been evaluated by a clinician, who has a major part of their practice involving Aspergers/spectum children, and has received at least 100+ hour of continuing education on the subject from published clinician in the field in the last 2 years.

Without a formal diagnosis most of the supports she needs both in the educational setting and the clinical world are very difficult to get. How much non-academic curriculum and accommodations (social skill, theory of mind, executive function sensory audit and environmental modifications etc) have you been able to get in school.

I do not know how self realized she is about being an Aspergers child but at her age it is definitely a need she has. There are many good books out there including the one referenced above and a lot about successful people with spectrum characteristics, which will help. This can be very self-liberating. I would also suggest the support of an Aspergers experienced councilor (hopefully one which has a lot of experience with teenage girls) to help her keep things in perspective.

Once she gets all the supports she needs to aid her with functioning in the neurotypical world so her anxiety level can be reduced and the self awareness of her extra gifts grows and she will blossom into a young adult which, if you do not try an turn her into a neurotypical, will amaze and inspire you well beyond you wildest dreams.

bookwormde

 

[ireland_nicole]

Have you thought about creating a really detailed touring plan w/ her? That way, she knows exactly what to expect, and can maintain control. Also, consider keeping meal and bedtimes the same as at home (as much as possible). Also, things like and ipod or DS to help her zone out when things get overstimulating. She might enjoy spending time on a website like TGM (there's a cost to that, but he's really helpful; and it's a great site if you like to make plans and dig into things.) Also, maybe a hidden mickey search...ok, I'll stop now, but hopefully these things will help.

 

[Luv Bunnies]

My oldest son has Asperger's. He'll be turning 13 next month. It's tough having an older child who doesn't act as people expect them to act. My son is big for his age and looks perfectly normal (in fact, very handsome if I do say so!). People automatically expect him to act a certain way and we get a lot of looks when he gets anxious or agitated in public. He has improved a lot lately due to placement in a wonderful middle school program designed especially for kids with Asperger's. Just being in a school where he is understood and accepted has helped him to calm down considerably.

My son is very happy and cooperative when he's doing what he wants to do. We've found that a series of warnings before switching him to a non-preferred activity can be helpful. If he's on the computer, I'll tell him 3 or 4 times that we're about to get in the car a go somewhere and he'll have to turn the computer off. Now that he's almost 13, he's conscious of time so I can say, "You have 10 more minutes, 5 more minutes, etc."

Our family loves Disneyland and we have taken both of our boys several times (the younger one is 9). We went to WDW when they were 11 and 8 and we had a very successful trip.

The key to keeping the peace is to make a plan at the beginning of the day as to where we will go first. We give both boys lots of choices about what they want to ride. We don't want the older one to make all the rules just because he will get anxious if he doesn't get his way. We don't want him to think he can purposely meltdown just to get what he wants. We want the younger one to get his choices, too. Often, my husband and I will each take a kid to do what they want. Maybe the younger one wants to go on Star Tours (for the 14th time) and the older one can't live without one more trip on Space Mountain before the park closes. We'll each take one and use our cell phones to meet up later. That way everyone can stay happy.

When my son was younger, he wanted to ride the Monorail and train over and over all day. Even if we were on the other side of the park, he'd start asking to ride the Monorail again (at Disneyland it starts in Tomorrowland). We had to explain that we weren't going to cross the park for a Monorail ride and we would get to it later. Now, he's fine about it. Although I did ride the train with him 1 3/4 times around the park last August! I waited until he wanted to get off and it was a nice rest for my feet!

I think the key with an Asperger child is to be flexible. Let them know what to expect and what's coming up next. But also let them make plenty of choices. My son can usually tell us when he's getting anxious and we can head off any major problems. He'll say, "I'm about to lose it!" That's our cue to figure out what to do about it.

In less than two weeks, we're getting on a cruise ship headed for Alaska! Our boys have cruised on Disney before and they loved it!

 

[Bill_Lin]

You might find some folks with similar experiences and helpful ideas at the Wish Trippers Unite thread. Many Wish Trip kids are on the autism spectrum. The link is in my signature.