Asperger's Son and room availibility

[beckmrk04]

I have no advice, or experience.... I just wanted to say I happened upon this thread and I knew nothing about Asperger's, but now I feel a little more educated, at any rate. Thanks for teaching me something today! I sincerely hope that the Magic of Disney pulls through and everything works out!!

For every other parent who is struggling- Your kids are lucky!

 

[Tinker*Shell*Bell]

D'AngelosdoDisney- I am sorry you are going through a rough spot with your son and hope that they are able to help him work through some of the anger. I did get a smile from the Trivia he always wins. Matt is a walking trivia game, who needs Trivial Persuit? I just say I have my own - Matthew.

Dina- I soooooo get what you said about the video game. Matt was freaking out last night at the restaurant because they didn't have the ice creal he always eats. He felt like they should have posted a big sign on the door so he could not eat there if he couldn't have HIS flavor.

Tinkwantabe- My son has been to quite a few smaller amusement parks in his life so he is good about lines and waiting until later for a ride. If not I would be in a total PANIC! Thankfully we did ADR's for dinner...that's the one thing he won't wait for. This is my son who likes to go to the grocery store with me because "It smells good." (yes, he said that to me.)

beckmrk04- I am so glad you found us! Aspies (people with Aspergers) are fun and amazing people. Difficult on the best of days but what's life without challenge? Matt makes me smile. It's a simple sentence but it's complete to me, I just "GET" him. I wish more people would learn a little more and get to know the Matt under the issues. You just made me think that there is hope!! THANK YOU!!! (Can you seen the tears in my eyes? I'm such a sap!)

Wow, I babble.... I'm so excited to be going to Disney again!!!

 

[TandyR]

Thank you for your supportive posts and for sharing your childrens stories. I am touched that you posted and the support was at just the right time. We just found out that DHS made a paperwork error and Matt's insurance is cancelled. Of course it "couldn't" be their fault so there is nothing to do but reapply, which takes months. Coming on and finding others experience similar difficulties with their children and that I am not crazy (ok, maybe a little) was a really good feeling.

I don't have any help for the room or anything like that. I just wanted to say that I am from Maine also and I have heard horror stories about DHS "losing" paperwork and cancelling insurance. (I work for the Bruce Roberts Toy Fund so I hear a lot about DHS.) They never admit that they made the error. I hope that it is taken care of quickly and I will keep your family in my thoughts for your insurance and so you get the perfect room at Disney.

 

[Poohnatic]

I had no idea there were so many Aspie parents on the DIS!

We're waiting for a social skills group to have an opening. It's such a struggle right now with my son. He's gained 15 pounds and 5 inches in the past six months and I am reaching the point that I can not physically restrain him in meltdown mode.

We're heading for a med change or increase. He's been on the same doses for almost 2 years and we can see the efficacy dropping with each passing month. Poor guy-he's inherited my quirky medication reactions.

Suzanne

 

[D'AngelosdoDisney]

Hi all, sorry I haven't gotten back to all of you in a few days. As you can imagine it has been very hetitic around here. My son is still in the hospital and is still having a hard time. He was placed on seraquel?? sp.. and his dose has been doubled since he has been there. He was given thorozin for the first three days just because his outburst were so bad, hurting himself, throwing things, going after other kids. At this point, he is having a very hard time being away from home and is crying every nite over the phone. He does well as long as we are there and when he thinks we are going to leave he cry about wanting to come home. This morning I called to speak with him and he was in the time out room. He had punched another kid in the face because he got blood tests and he was mad.

disneyelaine: How you speak about your child is exactly what my son does. He is violent, throws things, goes after kids and will hurt himself if he does not get his way. He gets very stuck on things and cant get past them. He needs to have control and be first at all times. God bless you and your family. If there is anything that I can help you with please let me know. I understand how you feel.. Gio was suspended twice in kindergarten ... he is now in first grade and can not go back to main stream school... Eileen

 

[D'AngelosdoDisney]

Hi again, have i mentioned that if you look at my son, talk to him or hang with him for a short period of time...... he looks and acts normal.. my friends are all amazed at what he is going through... just alittle fyi. . Eileen

 

[Tinker*Shell*Bell]

Hi again, have i mentioned that if you look at my son, talk to him or hang with him for a short period of time...... he looks and acts normal.. my friends are all amazed at what he is going through... just alittle fyi. . Eileen

That is what makes Asperger's so hard for many people to understand. Even my mom has a hard time understanding Matthew's varied needs. He just looks so NORMAL. (whatever normal means) He is so smart in about some things but struggles so much in other ways. He's an amazing kid most of the time, but then he melts down and it is awful!
<~me when he's having a bad day

 

[Earstou]

Yes, these kids can look normal! I had two friends argue with me and tell me my son was NOT Aspergers. One was a teacher (reading specialist) and one was an aide to an aspie child! I never did convince the teacher friend (she has since moved). My other friend started asking me questions every time I saw her (such as does he remove his shoes as soon as he walks in the door after school? YES! I hadn't realized the connection!!) She was finally convinced, but it was only because of her experience with another aspie child.

 

[D'AngelosdoDisney]

this is how i feel when this goes on........... Hi again, Gio is still in the hospital. May get out sometime next week. But not looking forward to dealing with this life again. He was so wonderful today when I was there.. so calm, so collected... punched someone in the face yesterday and had a melt down today because he wants to go home... School is giving me a hard time because they want to send him to boces. I want them to send him to a private special school.. why does he look so normal and have such problems???? This is so hard and im glad that I found others who can relate to my frustration and pain... Eileen

 

[mamacass]

My son too is on fluoxetine and it has made such a huge difference. Its been three years now and he continues to thrive. Puberty is just around the corner so I wonder if that will throw a wrench in the works?

 

[SueM in MN]

I don't know if any of you saw this episode of the PBS show called Nova when it aired in January 2005, but I thought it was very interesting. You can watch a 14 minute clip about the "mirror neurons" in the brain.
Kind of the short explanation is that the mirror neurons are connected with learning from what we see others do and understanding facial expressions in others. One theory is that people on the autism spectrum have a mirror neuron system that works differently than people without autism and that they are not able to effectively interpret and use what they see.

There was also a program about how the brain works a few years ago that was hosted by Alan Alda. It had one really interesting sequence where he talked with a college age man with autism who talked about his difficulty with reading facial cues and how he watches other people in social situations to figure out how to act and what emotion the other people were probably experiencing. He talked about how he was working to correctly identify facial expressions. Alan Alda did some facial expressions for him and the young man guessed the emotion and explained how he had gotten to his guess. That part was really interesting.

 

[Earstou]

Puberty is just around the corner so I wonder if that will throw a wrench in the works?

I'm wondering if puberty is causing the problems we've been having lately DS took off in a store tonight because he was mad at us. DH had to walk the store to find him, he was hiding behind the shelves avoiding DH. Jesh, I thought we were done with that type of behavior years ago!
He also has had problems in school lately, behavior wise and homework wise.

 

[4aspies]

We have a child with Asperger's that has similar issues. We have taken him to WDW many times, because it is one place where he can have many positive experiences. That being said, it can also be completely overwhelming, and not one of our trips have been "meltdown" free. Over the years we have gotten better at the pre-trip planning and preparation. We use storyboards, lots of pictures, daily schedules, etc to let him know what to expect. He looks forward to the trips. We ,as the family, try to get all the details nailed down. Rides, he was expecting, closed for renovation at the time of a visit, can be a big disappoinment. So, we check and double check, hope for the best, prepare for the worst (a meltdown) and have a crisis plan in place that the adults agree to before hand. We have found that with our guy, if we, as the adults, remain in control of the situation and calm, it helps to keep his anxiety in check. We have found that a DVD player with his favorites movies, a set of earphones, etc. can keep him in a "bubble" during transitions and check-in times, especially when he is tired. He uses these things to "destress". It might be useful for you to have available the calming strategies prior to checkin in case the process is prolonged.

 

[msklcassidy]

I came across this thread and read it from beginning to end. I have a 7 (nearly 8) year old son who has a few mild health issues; certainly none as serious as what you all are dealing with (and dealing with so effectively)! It is truly humbling to this mom. You all speak glowingly of your special children - focusing on the positive and planning so well - your kids are so very lucky to have you.

Thanks for letting me take a peek. Wishing you all the best,

Karen

 

[SueM in MN]

I came across this thread and read it from beginning to end. I have a 7 (nearly 8) year old son who has a few mild health issues; certainly none as serious as what you all are dealing with (and dealing with so effectively)! It is truly humbling to this mom. You all speak glowingly of your special children - focusing on the positive and planning so well - your kids are so very lucky to have you.

Thanks for letting me take a peek. Wishing you all the best,

Karen

Thank you for your kind words.
We always like to have people visit our little corner of the world and hope that their trip is pleasant.

 

[joycmc]

Hello all,
I have not posted in quite while but this thread caught my eye!
I have a soon to be 14 yr old Aspie!He has now developed Epilepsy and Tic disorder,so I understand and feel for all posters.

If you already have this info please disregard but nobody has mentioned it-
On all our trips since 1999-we have gotten a special assistance pass-
we ask the Md or school to give us letter stating K's issues and needs,bring it to guest services in First park we go to an they give us a pass to show cast members to help with line waits.Since fast pass, they usually direct us to that line-It considerably reduces wait time also in shows we have gotten some good seats.Helps so much-K is a pacer-so this way we avoid him banging into people-K doesn't rage but breaks down with huge tears it breaks my heart!!

Again if you have info sory for repeat!
have a great time !
we will be there in 6weeks and 3 days but who is counting.Lol

joy