Autism, Strollers and 1st time to Disney

[Forevryoung]

If you haven something you want to post a url for, I think you can send me a PM (Private Message) with the urls in. I could post them for you.
To send a PM to me, just click on my name and you should get a list of options, one of which is sending a PM.

This yahoo site is called PACT (Promoting Augmentative Communication Together) . They talk about everything from low tech (PECS) to high tech (computerized communication systems). There are quite a variety of people posting; professionals to parents of children with lots of different types of disabilities. I know in the past some people have posted links to free resources.

Sorry hijacking the thread for a min

Thank you so much Sue for that link!!! I am starting my masters in speech pathology next year and I am going to Penn State specifically for their AAC program/research. I joined the group and I can't wait to learn more.

 

[tacomaranch]

Thanks Sue for the Great site. It all started with the local child development saying I could not use the software. They have the funding for my DDS but we don't use their services. Why can't I go in and print pictures? I was not asking for the software, just to use it.

A very very long story short. Distant family friend is director at another Child Development Center, found her name, called and she told me by law what they have to provide for Hunter. The reason he doesn't go was because his IEP didn't address what was ordered for Hunter to help him, so we just don't go CDC. Now we find out that they could have refered us and they would have to pay for the services because they don't offer any! I was soo mad, and now so happy that I have learned something new that will help.

I wish there was a course or book on how to navigate the State Waiver and what the state intervention must provide.

We have written the letter to the CDC telling them we don't agree with the IEP and want a new review. We acknowldeged that the decisions we made were because I didn't know what options there were. Ignorance on my part.

Once again, I say, I want to go to Disney world because it is where dreams come true and I am tired of the nightmare!

Thanks for the great site Sue! I am joining the group today after I do my cleaning jobs.

I also must say I am sorry for being so OT. We are so new to the world of DD and it is very very hard living in a small town. We have to figure it out by ourselves and every move is so important. Thanks for letting me rant.

April

 

[AJKMOM]

I want to chime in that losing an autistic child at WDW is much worse than having one at the end of a "hand-holder" or "leash". In 11 trips, even using the GAC to go thru the FastPass lines, I have never had anyone say anything to me there. If they gave me a dirty look, well, I was too busy to notice.

There have been times when I will tell a person my son has autism, most often when he is breaking the law by "shoplifting" from a store or something. That does require an apology and explanation. I will say that we notice improvements in his behavior and attention span with each trip; that's why we go back.

You will like having the extra room at a DVC resort. We are owners at BWV, and it was the best thing we could have ever done to help when traveling with DS.

 

[Disneylvr]

April,I`m new here also.I just sent some links to your e-mail address I hope you don`t mind.They are some printable PECS sites and Autism cards you may want to print out for WDW.I`m grandmother of 12 yo non-verbal autistic grandson.When I tried to post the URL`s as a reply the message said I had to have a certain number of post before I could send URL`S so thats why I sent them to your e-mail.More soon. liz DW bound in May

Can I have those links as well???

 

[catherine1944]

HI, I have no idea how to send you the Printable PECS links.I thought I had sent them to a moderator and I keep getting a message that I haven`t been on the forun long enough to post URL`s.
So sorry.I even tried to see if I could use your PM by your name and it said the same thing.I`m not allowed yet to post links. liz Wish I could.The printable PECS are awesome.I didn`t have any way to use Boardmaker or any other software and these sites really helped. liz

 

[catherine1944]

First I don`t have PM on my computer.So I can`t do that anyway.Secondly.I can give you some information and just go to google search and that shoud get you to the printable PECS sites. OK google
dotolearn and trainlandtrupod.
Lots of information on both sites you`ll have to just find your way around.On the trainlandtripod site if I remember correctly scroll on the first page till you see PECS-She has tons of colored items there=Lots of name brand items.I print on card stock laminate it on both sides and cut out the pictures. liz

 

[catherine1944]

its trainlandtripod not trainlandpoud liz

 

[1stluvispooh]

April,
Sorry you are having a crappy day! Trust me we all have them!!! Rember God only gives you what you can handle. Although I have a tendancy to use Mother Theresa's line "I just wish he didn't trust me so much!" I know you are having a rough couple of months but things will get better! I am glad you have found a place where you fell supported

 

[sadeeyore]

Hi
Catherine they look like a great sites.- trainlandtripod
dotolearn

We have a DS who is nearly 10, he has autism and learning disability. He loves WDW so much and always makes improvements when we are there.
I'm sure you are going to have an amazing time .
We have been to WDW three times and have never been asked for a doctors letter. We always have DS with us when we go for the GAC.

April, although my DS is hard work, things have improved so much. I think our worst time was when he was three . I hope you are having a better day.

 

[Disneylvr]

First I don`t have PM on my computer.So I can`t do that anyway.Secondly.I can give you some information and just go to google search and that shoud get you to the printable PECS sites. OK google
dotolearn and trainlandtrupod.
Lots of information on both sites you`ll have to just find your way around.On the trainlandtripod site if I remember correctly scroll on the first page till you see PECS-She has tons of colored items there=Lots of name brand items.I print on card stock laminate it on both sides and cut out the pictures. liz

I found it! Thank you so much!!!!

 

[Disneylvr]

Hi
Catherine they look like a great sites.- trainlandtripod
dotolearn

We have a DS who is nearly 10, he has autism and learning disability. He loves WDW so much and always makes improvements when we are there.
I'm sure you are going to have an amazing time .
We have been to WDW three times and have never been asked for a doctors letter. We always have DS with us when we go for the GAC.

April, although my DS is hard work, things have improved so much. I think our worst time was when he was three . I hope you are having a better day.

My daughter just turned 3 last month and the past month or so has been very rough; her first IEP, our continuing battle with the school district for ABA and a one-on-one aide..... So I am thinking you are right. The parents in our support group also say that right now, age 3, is the hardest time you will have. for all of us!

 

[ditzoyd]

I too have a Autistic son who is 5 and is a runner.

First, if you have success with a leash use it. I also plan on purchasing a medical alert braclet with our cell numbers on it in case he gets seperated from us. I heard that a laminated card with your name and hotel name on it on a lanyard is helpful. A friend did this, and left contact info with the hotel in case of emergency.

I have a pin I am planning on wearing a pin I purchased that states "Life Lesson in Progress, Child with Autism, Thankyou for your patience." I will ignore the stares and maybe the rude people will become slightly educated.

I am bringing my stroller from home, he is familure with it, and it wont blend in with all the other strollers.

Good luck and have fun!

Laura

 

[tacomaranch]

Hunter and I just finished test driving his old stroller. We got it out of the barn and grabbed the drill and took everything off. Then put it thru the washmachine with vinegar and soap. Then we put it all back on. Of course we lost two screws in the process, but when we were finished we had a nice stroller with a cover and it is soft fabric, not hard plastic. We walked down the road and took a test drive with it. He loves it and loves the cover. Problem is he looks just a bit too big for it. Not too much, just a little bit. But he is comforatable and it will keep him from running, I hope.

Do they allow private strollers in disney parks?

Good news, I have an attorney to help us work out our problems with the local child development center. I hated to it but I am just exhausted.

Hunter needs me.

Thanks for the support! April

 

[SueM in MN]

HI, I have no idea how to send you the Printable PECS links.I thought I had sent them to a moderator and I keep getting a message that I haven`t been on the forun long enough to post URL`s.

You sent them to me.
I didn't have time to check them out last night, make sure they all worked and post them. Here they are:
Printable autism awareness cards

Black and White PECS

More printable PECS and list of resources

The links for the 2 yahoo groups didn't work (one was the mouse for less - that opened up an email window). The other one just opened a page that said the page could not be found.

Do they allow private strollers in disney parks?

And, if you get a GAC (Guest Assistance Card) that allows a stroller to be used as a wheelchair, you can bring it into lines and into buildings where strollers are not usually allowed.

 

[KathyRN137]

Hi, April!

Your 1st WDW trip is getting closer and closer! (I'm jealous!). How are things going? How much does Hunter know about your trip? Does he know about any of the attractions? My son wanted to watch the vacation planning DVD every day for about a month before we went, so I could kind of figure out which things excited him the most by his reactions to the DVD....it helped me plan our itinerary!!

Kathy

 

[tacomaranch]

Hi Kathryn,

We are 8 days away from leaving and 9 from waking up in Disney! Hunter doesn't have a concept of we are going to Disney at all, for that matter we are going anywhere until we actually go. I do have a vacation video so I will put it in and see what happens.

I still have to change our plans for dining as we are going to MK the first day now since they extended hours. We are going to try use the hours early and late with our nap in the early afternoon. How grateful I am that he still naps! Today I took one also.

I can't PM you yet as I am new also, but here is my email: tacomaranch@hotmail.com . Put something in the subject or else I will delete.

Hunter's Disney shirts arrived from great mom's on a mom savers board. He has a cute tigger shirt and splash mountain shirt so we are set. I am going to try to find a few Mickeys or stuffed toys to pack and pull out when he wants on and we can't buy it there.

We are just so excited!

April

 

[disneygal66]

Hi All!


I too am the mother of DS6 with ASD and also a DD10 with NVLD, Anxiety and ADD. I hope that your trip to Disney is the best, April. You need it after everything you all have gone through. I know the nightmare of crying all the time too. It WILL get better. My Autistic son is speaking in 4-5 word sentences now and the progress he has made is just tremendous. I credit our terrific therapists and school district for that. Just try to enjoy your time at Disney and relax. We went for the first time with our kids last Nov and enjoyed ourselves so much, that we are going back twice this year. Ignore the people who may give you the "look". You are entitled to use the GAC (which we did as needed). I hope everything goes well for you.

 

[catherine1944]

You probably don`t have time now with your Disney vacation so close,But I have been making T-shirts for our Disney vacation in 30 days.
I bought white and pastel t-shirts and t-shirt transfer paper.I have a Disney cd I found at a Big lots store.I print the picture/pictures out and iron them on the t-shirts.I also google Disney images and found some great pictures to print onto the t-shirts.
But you have to make sure your printer is set to mirror image so the picture prints backwards on the transfer paper so the it iron onto the shirt correctly.
I found a great web site that expalins this step by step.If anyone wants it you can mail me at my e-mail or maybe that great moderator could post it after she looks at it.
When this is done it is for personal use only you cannot ever sell anything like this.OK its late here and I have a few more thing to look at. Catherine1944

 

[tacomaranch]

We woke up and I told everyone we only 8 more days until we leave for Disney!

I am starting to get excited. Hunter and watched the trip planing video last nite and after watching it once, he took it out and brought it into our bedroom to watch again. We all feel asleep watching the trip planner.

Our stroller is ready if we want to bring it and I found a cute mickey backpack that is like new in a box. We have our coupons for pins, our luggage tags and all that is left is the packing of the clothes and food.

Since we won't have a car, I am trying to pack food to use while we are there.

And finally, it is the weekend. That means riding our snowboards in the back country! I am so happy to be able to ride the mountains and throw all my anger at the hill while flying down fast with my hair on fire!

All the best to my new friends here on Disboards.com wishing everyone a great weekend!

April, 8 days to go!

 

[playwright]

Hi April,
Hope you and your family have a great trip! Write up a report when you get back if you have time.