Our completely unpredictable PTR- WDW with Autism May 25-31

[sl_underwood]

Be sure to read the threads about the Rapunzel meet and greet. You really need to get there early. The wait lines are incredible. The children color, then learn a dance, then is the meet and greet. The area only accomodates so many children. We have not done this yet, the line has been outrageous. The GAC doesn't help with any alternate entrances to any of the MK meet and greets.

We may have to miss this too. We will just wait and see. If the line is not to bad, we might try it but if not, it wont be a big deal. I can always leave Jess in line if need be and take Luke to do something else. I dont particularly like to split up but I? know Luke does not do lines well. I would rather save our line waits for things that are really important. He can do it for awhile but if we do to many it definitely will cause serious issues. I am already worred that on SWW he will end up not able to do anything. Crowds can become overwhelmong for him. I just hope he can do a few things and enjoy his trip.

 

[sl_underwood]

Our SWW shirts are supposed to arrive today- bought one for Jess and one for Stephen at Hot Topic. Got Luke one at WM for $3. Great deal. Ordered new swimsuit for me and one for Jess, both are scheduled to arrive today. My disney store order is supposed to be here today too. Cant wait. I ordered park gifts for my neices and nephews. I know I am supposed to get those in the parks but with 6 neices and nephews, not easily done. Plus, Luke doesnt do shopping for very long. Figured, it would be easier and less expensive to order online. I did order many items that can be found in the parks though. Lots of summer clothes that are supposed to be here today or tomorrow. Once everything arrives and I know they fit, I can start packing! I am going to be one of the weirdos that packs everything weeks ahead of time but in my case its to keep my kids from damaging their new clothes before disney. Packing just adds to the excitement. Almost there! Just 5 weeks left!

 

[Corrine 1973]

Our SWW shirts are supposed to arrive today- bought one for Jess and one for Stephen at Hot Topic. Got Luke one at WM for $3. Great deal. Ordered new swimsuit for me and one for Jess, both are scheduled to arrive today. My disney store order is supposed to be here today too. Cant wait. I ordered park gifts for my neices and nephews. I know I am supposed to get those in the parks but with 6 neices and nephews, not easily done. Plus, Luke doesnt do shopping for very long. Figured, it would be easier and less expensive to order online. I did order many items that can be found in the parks though. Lots of summer clothes that are supposed to be here today or tomorrow. Once everything arrives and I know they fit, I can start packing! I am going to be one of the weirdos that packs everything weeks ahead of time but in my case its to keep my kids from damaging their new clothes before disney. Packing just adds to the excitement. Almost there! Just 5 weeks left!

Can't wait to see pictures of all the great loot you ordered online.

5 weeks till Disney.

 

[sl_underwood]

Can't wait to see pictures of all the great loot you ordered online.

5 weeks till Disney.

Will have to post as soon as they arrive!

 

[lovethattink]

Our SWW shirts are supposed to arrive today- bought one for Jess and one for Stephen at Hot Topic. Got Luke one at WM for $3. Great deal. Ordered new swimsuit for me and one for Jess, both are scheduled to arrive today. My disney store order is supposed to be here today too. Cant wait. I ordered park gifts for my neices and nephews. I know I am supposed to get those in the parks but with 6 neices and nephews, not easily done. Plus, Luke doesnt do shopping for very long. Figured, it would be easier and less expensive to order online. I did order many items that can be found in the parks though. Lots of summer clothes that are supposed to be here today or tomorrow. Once everything arrives and I know they fit, I can start packing! I am going to be one of the weirdos that packs everything weeks ahead of time but in my case its to keep my kids from damaging their new clothes before disney. Packing just adds to the excitement. Almost there! Just 5 weeks left!

Yesterday, I saw Target has some cute boys Star Wars shirts and pajama sets! I found a video online about bundle packing. I did this when we went in March and nothing got wrinkled in the suitcase! And it used up so much less space! I have a tendency to overpack. The weather has been incredible here. It's been in the 80 during the day and 60's at night. The weather report said it's suppose to pick up in humidity tomorrow though.

80's and not humid are so nice and comfortable!! Add in humidity and that comfort zone isn't there anymore.

I saw a SSW rumor online yesterday on several different sites. That Yoda might become part of the Jedi Training Academy. Also when I was at a restaurant this weekend, I was told that Disney is expecting wait times up to 4 hours for the new Star Tours attraction during SSW. While I think the yoda thing could be neat, I sure hope the wait time for Star Tours isn't around 4 hours!!!

Can't wait to see pictures of all the great loot you ordered online.

5 weeks till Disney.

Yes, Please post pics!!

 

[sl_underwood]

Just got the news that our ABA therapist is moving. She will only be here for 3 more weeks. I am actually in tears. She has helped me a great deal, even though she has only been with us for about a year. There is no one else here who is trained, in fact, the outpatient center that Luke attends half day 4 days a week is pretty much daycare that insurance pays for without her there. The few days she has not been in the center, the kids get very little done. Out of the 4 hours he is there, 15-30 minutes is spent with the OT on handwriting and 30 minutes of art in a group setting with about 5-7 kids. Another 15-30 minutes of play attention therapy, and the rest is done by the ABA therapist. The center sent home a note that she was leaving and that they would not be actively searching for a replacement. They have a LPC in the building and she will be taking over the individual therapy and group will be done with youth guidance counselors. In our area, this will be fine with just about everyone but me. Most people use this outpatient day treatment as daycare for the special needs kids, but for us, it is not okay. It feels as if I am the only parent here who actually wants someone to do something for my child. When he was in school, I continually fought them to provide instruction and they kept telling me I should just be happy that they kept him there. Outpatient therapy is the same way now. They want me to keep him there when he is really getting nothing out of it. Eveyone seems to think I should just be happy he is out of my hair for awhile and sadly, most of the parents I know who have SN kids are. I have to wonder if this is just an issue in my area or if all over, parents are just throwing their kids into schools that dont teach and outpatient treatment programs that dont treat. Am I in the minority? I have to wonder. Would moving somewhere near a big city help? Would there be better schools, ABA programs, etc? or would I be stuck in the same boat with no other option but daycare?

 

[lovethattink]

Just got the news that our ABA therapist is moving. She will only be here for 3 more weeks. I am actually in tears. She has helped me a great deal, even though she has only been with us for about a year. There is no one else here who is trained, in fact, the outpatient center that Luke attends half day 4 days a week is pretty much daycare that insurance pays for without her there. The few days she has not been in the center, the kids get very little done. Out of the 4 hours he is there, 15-30 minutes is spent with the OT on handwriting and 30 minutes of art in a group setting with about 5-7 kids. Another 15-30 minutes of play attention therapy, and the rest is done by the ABA therapist. The center sent home a note that she was leaving and that they would not be actively searching for a replacement. They have a LPC in the building and she will be taking over the individual therapy and group will be done with youth guidance counselors. In our area, this will be fine with just about everyone but me. Most people use this outpatient day treatment as daycare for the special needs kids, but for us, it is not okay. It feels as if I am the only parent here who actually wants someone to do something for my child. When he was in school, I continually fought them to provide instruction and they kept telling me I should just be happy that they kept him there. Outpatient therapy is the same way now. They want me to keep him there when he is really getting nothing out of it. Eveyone seems to think I should just be happy he is out of my hair for awhile and sadly, most of the parents I know who have SN kids are. I have to wonder if this is just an issue in my area or if all over, parents are just throwing their kids into schools that dont teach and outpatient treatment programs that dont treat. Am I in the minority? I have to wonder. Would moving somewhere near a big city help? Would there be better schools, ABA programs, etc? or would I be stuck in the same boat with no other option but daycare?

I'm so sorry to read this. There seems to be a lack of programs in other cities as well. Awareness in the community is lacking. I'm not sure that moving is the answer?

 

[sl_underwood]

It seems to me that there is no answer. People just dont care unless it affects them and even sometimes when it does, they would just rather stick their head in the sand instead of seek help. I think our kids would be so much better off if programs were readily available and people were willing to help. I can do a lot at home but I only can do so much. Before, Luke came to me, I knew nothing about raising a kid with special needs like these. I can deal with a kid who has severe behavior issues but these methods dont work for Luke because he is not always in control of his behavior. 4 years ago, he came to me in a full body cast with 27 broken bones and a skull fracture. In addition to the physical abuse, he was neglected. He had not been fed properly, been left alone for days at a time, and had very little human contact. The DHS worker said all of his problems were due to severe abuse and neglect, that with a safe and loving family, he would improve and he did, just not to the extreme she kept telling us he would. During the past 4 years, he has been dx'd with RAD, PTSD, GAD, SPD, ADHD, PDDNOS, and most likely a few more letters that I have forgotten to write. They all send me in a different direction for research but only the autism research has been at all helpful. I know for a fact that he did have a traumatic brain injury which may have led to some of the learning difficulties. I also suspect that his birth mom used both drugs and alcohol while pregnant which could also account for some of his issues but to this point ABA is the only therapy that has actually helped him. I found a few books on amazon today about implementing ABA at home and I think I might purchase them. I am also reading the books that you suggested Tink- The Out of Sync Child and The Guide to Aspergers. I am hoping that these books help. I just wish we could raise awareness enough so our kids could get the help they need and we could get the support we need.

 

[Singledad]

I'm so sorry to read this. There seems to be a lack of programs in other cities as well. Awareness in the community is lacking. I'm not sure that moving is the answer?

I agree about this. Lack of programs that WORK everywhere, lack of proper awareness. Yes, you have more options in some cities, but is that really the answer? That is something only you can decide if it is the answer for you, your child(ern) and your family.

 

[lovethattink]

I know. I understand. Hopefully with increased awareness will come increased funds. I have hope that since Autism starts suddenly, that with proper research it will be discovered how to stop it!

 

[sl_underwood]

I truly hope so.
On a happier note, Kara just got home and found my ME stuff in the mailbox.

 

[Singledad]

I truly hope so.
On a happier note, Kara just got home and found my ME stuff in the mailbox.

yay!!!

 

[Corrine 1973]

I am really sorry that you are going through this. It sucks how some people just want to sweep it under the carpet and pretend it doesn't exist. Isn't it out jobs as parents to prepare our kids for the outside world so one day we can let them be on there own? How can we do that if we don't have the resources to teach them all the skills they need to survive the outside world? I suggest trying to find some other parents at the school who's kids use the services the teacher provides. I am sure you are not the only parent who feels this way. Maybe together you can think of a way to convience the school to find a new person to cintinue to program? Just a thought.

So glad to here about ME mail. You should be getting Mickey Mail soon.

 

[lovethattink]

I truly hope so.
On a happier note, Kara just got home and found my ME stuff in the mailbox.

Hurray!!! Times getting closer and closer!

 

[sl_underwood]

I am really sorry that you are going through this. It sucks how some people just want to sweep it under the carpet and pretend it doesn't exist. Isn't it out jobs as parents to prepare our kids for the outside world so one day we can let them be on there own? How can we do that if we don't have the resources to teach them all the skills they need to survive the outside world? I suggest trying to find some other parents at the school who's kids use the services the teacher provides. I am sure you are not the only parent who feels this way. Maybe together you can think of a way to convience the school to find a new person to cintinue to program? Just a thought.

So glad to here about ME mail. You should be getting Mickey Mail soon.

It is our job to help our children be the best that they can be. Unfortunately, there are hardly any services where I live, maybe everywhere is like this and our schools teach parents from day 1 to expect nothing from our kids. When Luke was in school, they told me I should never expect him to move forward, that it was not likely. One even stated that he would never get past the 2nd grade so I was expecting to much. I took him to my own psychologist who tested him and his IQ is above average. She told me that there was no evidence of what the school was stating. I think most parents here are believing this and they give up on their kids before they even have a chance. It is also common for parents to give up rights or place thier kids in long term residential treatment here. Of the few parents who actually parent, most have kids who are too bright for the residential treatment facilities for the severely handicapped and the schools keep on telling them what their child will never do and these parents never question this. In my case, I know my son is more than capable of learning. He came to me at 3.5 years with the abilities of an infant and in the past 4 years, he has improved to where he is now between 3 and 5 depending on the area of development. Speech is his lowest score at 3.6 years. So as our neuropsych said, in about 4 years, he has gained 3+ years of knowledge. Definitely proves that he has the ability to learn. She also was and still is my #1 supporter for homeschooling him. She only sees him 2x a year now and each time she is amazed at his improvement. While in school, he made minimal progress, once I hired my own team of PT, OT, speech, counselors, etc he skyrocketed. Without her, I know we will take a few steps backward in the behavioral area particularly. Just her telling him she would be leaving threw him into a tail spin and he hit her today and told her he didnt care, he hated her anyway. Then he came home and cried, asking me why everyone he loves leaves him. I will probably continue with the program just because he atleast gets some interaction and I get a break but it will be nothing like the program it was before.

 

[sl_underwood]

More Mickey Mail today! Got my luggage tags! The problem... I am to stupid to figure out how to attach them to my luggage. Looks like they need to be cut. Anyone else figure this out yet?

 

[Corrine 1973]

More Mickey Mail today! Got my luggage tags! The problem... I am to stupid to figure out how to attach them to my luggage. Looks like they need to be cut. Anyone else figure this out yet?

Just got mine to so I am looking at them to see if I can help.
It looks like they are stickers, and if you look on the underside they say peel here. Backing part of the stickers has a cut edge about four inches from both ends. That is where you should stop taking off the sticker backing. Than just put it through the bag handle and put the ends of the tag together.

Hope this helps.

 

[Singledad]

don't cut them~!~ they are long, because they to be be looped around the handle just as Corrine described.

http://www.mouseplanet.com/7257/Express_Experience has a photo of one attached to their luggage, though mine looked a bit longer than that.

 

[lovethattink]

More Mickey Mail today! Got my luggage tags!

Hurray for more Mickey Mail!! I knew someone here would be able to help you with the how to!

 

[sl_underwood]

I am not talking about the DME tags, but the souvineir tags.