MAW daughter with Rett Syndrome going to WDW!

[cogero]

the are subscribing to your thread so they get updates

 

[luvmygrlz3]

the are subscribing to your thread so they get updates

Thanks for letting me know (blushing)...I had no idea...but one more question then- how do you "subscribe" to a thread? I'd love to get updates as well of others here too. I appreciate your time!

 

[HeatherSue]

Hi! You've got another follower!

When you post on a thread, you are automatically subscribed. You can also subscribe by going to the top where it says "thread tools" and click on subscribe.

To post pictures (hint, hint):
Method 1
1. Upload the pic of your choice to photobucket
2. Resize the pic in photobucket click on the thumbnail of the picture, it will open up, then click (above the pic)> resize > 15" screen- it will make you verify that you would like to resize the pic (I like the 800X600 size pictures instead of the message board setting, it shows lots more detail)
3. After the pic has resized, go to your album, below the pic that you would like to post, there are 4 different codes (email & IM, direct link, html code & IMG code) Click in the box that has the has the IMG code. It will look something like this http: xxxxxxxxxxxxx
When you click on that box, it will light up in yellow, and say "Copied"
4. In the thread on the Dis (in another open window), click on "post reply". When you are ready to post the pic, right click - a box will open, click on paste. This will paste the link that you copied from your photobucket account.
5. Post reply. The pic should show up!
[/color]

Method 2
You can also post pictures directly from Facebook and most any other website you have your pictures posted too already:

1.)Right click on you picture,
2A)If you are using Firefox: click, on the option that says "copy IMAGE location" (do NOT click the one that says "copy LINK location" or the one that just says "copy image" they will not work)

2B)If you are using Inernet Explorer click: Properties, then copy the image location information. You must copy the part that says "address (url) that has the http:// at the beginning and the .jpg at the end. This is usually NOT the first one listed on the properties page.

It must look something like this: http:// sphotos.ak.fbcdn.net/hphotos-ak-ash1/ hs452.ash1/24894_382437053159_677208159_3918266_2650_n. jpg

NOT:
24894_382437053159_677208159_3918266_2650_n. jpg (which is the first one)

3.)Then, for either one, paste that into the little picture linkie thing up there at the top of your reply box (here on the Disboards).

 

[luvmygrlz3]

Hi! You've got another follower!

When you post on a thread, you are automatically subscribed. You can also subscribe by going to the top where it says "thread tools" and click on subscribe.

To post pictures (hint, hint):
Method 1
1. Upload the pic of your choice to photobucket
2. Resize the pic in photobucket click on the thumbnail of the picture, it will open up, then click (above the pic)> resize > 15" screen- it will make you verify that you would like to resize the pic (I like the 800X600 size pictures instead of the message board setting, it shows lots more detail)
3. After the pic has resized, go to your album, below the pic that you would like to post, there are 4 different codes (email & IM, direct link, html code & IMG code) Click in the box that has the has the IMG code. It will look something like this http: xxxxxxxxxxxxx
When you click on that box, it will light up in yellow, and say "Copied"
4. In the thread on the Dis (in another open window), click on "post reply". When you are ready to post the pic, right click - a box will open, click on paste. This will paste the link that you copied from your photobucket account.
5. Post reply. The pic should show up!
[/color]

Method 2
You can also post pictures directly from Facebook and most any other website you have your pictures posted too already:

1.)Right click on you picture,
2A)If you are using Firefox: click, on the option that says "copy IMAGE location" (do NOT click the one that says "copy LINK location" or the one that just says "copy image" they will not work)

2B)If you are using Inernet Explorer click: Properties, then copy the image location information. You must copy the part that says "address (url) that has the http:// at the beginning and the .jpg at the end. This is usually NOT the first one listed on the properties page.

It must look something like this: http:// sphotos.ak.fbcdn.net/hphotos-ak-ash1/ hs452.ash1/24894_382437053159_677208159_3918266_2650_n. jpg

NOT:
24894_382437053159_677208159_3918266_2650_n. jpg (which is the first one)

3.)Then, for either one, paste that into the little picture linkie thing up there at the top of your reply box (here on the Disboards).[/QUOTE]

Thank you for the info! I knew about Photobucket as far as IMG posting...but not with resizing...and I didn't know about FB....I'm going to give that a try! ;)

 

[luvmygrlz3]

Testing the image from FB...EEK! I think it's too big! Let me go to PB and try resizing it...I would like it in my siggy...

 

[brookerene]

Your daughter is beautiful.. thanks for posting...

 

[SueM in MN]

Testing the image from FB...EEK! I think it's too big! Let me go to PB and try resizing it...I would like it in my siggy...

Big is nice sometimes - it does give us a chance to see your beautiful daughter.

My daughter does not have Rett, but she does have seizures and has cerebral palsy, so if you want to ask me any questions about touring with a child (adult child) with seizures and a wheelchair, feel free to ask anything.
She also does not speak. I don’t know if your daughter uses any communication boards or communication device, but there are some resources on post #3 of the disABILITIES FAQs thread that will help you if she does under Communication Devices/PECs. Everything is categorized and the conditions or concerns are in alphabetical order.

 

[luvmygrlz3]

Your daughter is beautiful.. thanks for posting...

Thank you!! I think she's beautiful too...

 

[luvmygrlz3]

Big is nice sometimes - it does give us a chance to see your beautiful daughter.

My daughter does not have Rett, but she does have seizures and has cerebral palsy, so if you want to ask me any questions about touring with a child (adult child) with seizures and a wheelchair, feel free to ask anything.
She also does not speak. I don’t know if your daughter uses any communication boards or communication device, but there are some resources on post #3 of the disABILITIES FAQs thread that will help you if she does under Communication Devices/PECs. Everything is categorized and the conditions or concerns are in alphabetical order.

Thank you for the info! We use a Cheap Talk device for her but she uses "eye gaze" more than anything...if you can tell in the pic, her hands stay together and to get her to seperate them is a pain in the rear! So she will look at pics for answers...(that's why they only consider her being at the 6 mth level- because she doesn't verbally or physically answer questions). I am off to check out those sites you posted about.

I am unsure of any questions at the moment as far as travel...Actually I lied!!!! I know we've never flown w/ her, so do they allow you to wheel your child up to the plan and then store the chair in a place for easy access once you arrive at your destination? I just want to make sure we will have it as soon as we get off the plane.

Also, I am in search of a wheelchair backpack type thing...something that hooks on the handles of a regular lightweight wheelchair (the collapsable type)... I need a good size bag so that I can keep her diapers/wipes/snacks/drinks/etc. for the family while in Disney. Any suggestions?

 

[SueM in MN]

About air travel, all the answers are yes.

There is more information about air travel ( with pictures) in the disABILITIES FAQs thread. I think it's in post 9, but there is an index in post one that tells which posts have what information. There's a link to the FAQs thread in my signature if you need help getting to the thread.

For the backpack question - we have always just used a regular backpack with the straps over the wheelchair push handles. A regular backpack is much less expensive and many of the wheelchair ones are designed more for access by the person who is sitting in the wheelchair. If you want the regular backpack to hang better, it's easy to add a little strap on each side that hangs out sideways ( instead of up and down like the straps already on the bag). You can also use large ziplock bags inside the backpack larger compartments to separate things. We also have a small bag attached underneath DD's wheelchair seat for things like extra clothing and wipes that might be used in the bathroom. That bag started out as a messenger bag, but I added some Velcro to keep things closed, added and rearranged some straps.

 

[luvmygrlz3]

About air travel, all the answers are yes.

There is more information about air travel ( with pictures) in the disABILITIES FAQs thread. I think it's in post 9, but there is an index in post one that tells which posts have what information. There's a link to the FAQs thread in my signature if you need help getting to the thread.

For the backpack question - we have always just used a regular backpack with the straps over the wheelchair push handles. A regular backpack is much less expensive and many of the wheelchair ones are designed more for access by the person who is sitting in the wheelchair. If you want the regular backpack to hang better, it's easy to add a little strap on each side that hangs out sideways ( instead of up and down like the straps already on the bag). You can also use large ziplock bags inside the backpack larger compartments to separate things. We also have a small bag attached underneath DD's wheelchair seat for things like extra clothing and wipes that might be used in the bathroom. That bag started out as a messenger bag, but I added some Velcro to keep things closed, added and rearranged some straps.

AWESOME information!!! I may go on a hunt for a regular 'ol backpack for her wheelchair. We are still waiting for her insurance to approve her wheelchair and hoping we get it all approved before our trip. We've always just rented one when we go places plus her walking has become so unsteady lately it's time for one.

 

[fulseasmama]

I just noticed your posts on the final pages of the Vol 3 MAW posts so I decided to come on over and say hi. Thanks for sharing your daughters story and her beautiful picture. I am so glad she gets a wish for her and your whole family...congrats on dates.

In the other posts you mentioned maybe wanting to do some princess dining but were worried about cost. I just thought I would pass along some of my thoughts. We were in the same boat about costs for some things we wanted to try and do with my kids. Our MAW chapter had already offered a special dining if we wanted so I took them up on it and let them know we wanted to dine at the castle if possible...I am happy to report they were totally happy to make that happen. So if this is something you would really like to do as a family I would just ask your wish granters...they really want you to have the best trip possible. So after that was taken care of I started to think I really wanted to take the kids to BBB before we dine at the castle but could not figure out how the costs for that would work out then my cousin was asking what the kids might like for Christmas and I really had no idea. Then she offered to maybe give them some money for spending at Disney and I thought to myself maybe she could pay for BBB. She is totally happy to do so and excited to help out. Anyway, I realize Christmas is already past but maybe some of your relatives would be happy to help chip in as early birthday presents for your girls or something if MAW can't help with the cost of a meal with the princesses. I have found many of our family members and friends want to help make this amazing trip even more special for our family which has been great and helped me plan some things I never thought I would be able to do. I hope you can too!

Wow, that was long for my 2 cents worth, sorry! I look forward to following along as your family plans your trip. Nice to "meet" you here on the dis boards.

 

[luvmygrlz3]

I just noticed your posts on the final pages of the Vol 3 MAW posts so I decided to come on over and say hi. Thanks for sharing your daughters story and her beautiful picture. I am so glad she gets a wish for her and your whole family...congrats on dates.

In the other posts you mentioned maybe wanting to do some princess dining but were worried about cost. I just thought I would pass along some of my thoughts. We were in the same boat about costs for some things we wanted to try and do with my kids. Our MAW chapter had already offered a special dining if we wanted so I took them up on it and let them know we wanted to dine at the castle if possible...I am happy to report they were totally happy to make that happen. So if this is something you would really like to do as a family I would just ask your wish granters...they really want you to have the best trip possible. So after that was taken care of I started to think I really wanted to take the kids to BBB before we dine at the castle but could not figure out how the costs for that would work out then my cousin was asking what the kids might like for Christmas and I really had no idea. Then she offered to maybe give them some money for spending at Disney and I thought to myself maybe she could pay for BBB. She is totally happy to do so and excited to help out. Anyway, I realize Christmas is already past but maybe some of your relatives would be happy to help chip in as early birthday presents for your girls or something if MAW can't help with the cost of a meal with the princesses. I have found many of our family members and friends want to help make this amazing trip even more special for our family which has been great and helped me plan some things I never thought I would be able to do. I hope you can too!

Wow, that was long for my 2 cents worth, sorry! I look forward to following along as your family plans your trip. Nice to "meet" you here on the dis boards.

Thank you so much for your input! I did mention to our Coordinator about Character Dining and she did say that since it wasn't the actual wish that they couldn't help with that. But that's ok...they are doing SOOOO much as it is and I am really grateful.

I'm sure my husband will be ok with a Character Dining experience. It's expensive but it is a Once in a Lifetime experience for all of us with all of our girls at the ages they are now. We just haven't had a night to sit and actually try to plan together. I work nights & I am in school nights as well...we'll figure it out somehow or another! LOL...

 

[visitingapril09]

Signing up for updates here too!

 

[SueM in MN]

If you have never been to this website before, you may want to look at this website: Rettgirl. This particular page is about iPads, which have proved to be very motivating to some kids with disabilities, specifically autism and Rett. This page lists some of the apps (little programs) that people have found especially interesting to their girls.

 

[Emilyswish]

We just got back from our Make A Wish trip with our daughter Emily and it was fabulous! I'm so happy you're getting to go to Disney with your three princesses. Emily is only 3, but seems very similar in abilities and conditions to Khelsey.

We were able to roll Em right up to the door of the plane and then they took care of checking her wheelchair (along with other people's strollers, carseats, etc) right there and it was waiting right outside the airplane door when we landed.

Also, I can't speak specifically to your MAW chapter versus ours, BUT we did not ask for a character experience either. However, we made reservations to do 2 character dining experiences with our crew (4 kids total) anyway paying out of pocket and just hoped that the expense check they gave us would help with the cost. Our expense check ended up being very generous and more than enough to cover both meals and then some. We got our check about 5 days before we left. I hope you'll get the same!

We went to Akershus in Epcot with the princesses and to The Crystal Palace in Magic Kingdom with Tigger and friends (my dd really loves orange!)

 

[luvmygrlz3]

If you have never been to this website before, you may want to look at this website: Rettgirl. This particular page is about iPads, which have proved to be very motivating to some kids with disabilities, specifically autism and Rett. This page lists some of the apps (little programs) that people have found especially interesting to their girls.

Awesome site Sue!!! I'm off to check this out! My family members are constantly trying to figure out gifts to get Khelsey for her bday or for Christmas, etc...and I think I may just have them consider pitching in a getting an Ipad!!! Her birthday is at the end of this month! I would've NEVER thought! Now, I'm off to read more! Thank you again for all of your wonderful help!!!

We just got back from our Make A Wish trip with our daughter Emily and it was fabulous! I'm so happy you're getting to go to Disney with your three princesses. Emily is only 3, but seems very similar in abilities and conditions to Khelsey.

We were able to roll Em right up to the door of the plane and then they took care of checking her wheelchair (along with other people's strollers, carseats, etc) right there and it was waiting right outside the airplane door when we landed.

Also, I can't speak specifically to your MAW chapter versus ours, BUT we did not ask for a character experience either. However, we made reservations to do 2 character dining experiences with our crew (4 kids total) anyway paying out of pocket and just hoped that the expense check they gave us would help with the cost. Our expense check ended up being very generous and more than enough to cover both meals and then some. We got our check about 5 days before we left. I hope you'll get the same!

We went to Akershus in Epcot with the princesses and to The Crystal Palace in Magic Kingdom with Tigger and friends (my dd really loves orange!)

Thank you so much for giving me all of this very helpful information! I'm glad that we can get Khelsey wheeled right up to the plane...I sure hope she does well with flying though...that's my next hurdle to tackle...trying to figure out how to keep her very happy for our flight!

Also, thank you for the tidbit about the Character dining...I'll keep that in mind. My husband and I are actually going on a date tomorrow night (first time in a YEAR) and this will definitely be one of the topics of conversation.

Again, thank you!

 

[luvmygrlz3]

Oh my goodness...we tried Khelsey on using the Ipad for some Apps set up for Rett girls...My father-in-law bought my MIL one for Christmas...Khelsey LOVED it! She LOVES to play in water and there's one of a fish "pond" kinda thing and it shows fish swimming around...all you have to do is touch the "water" and it swishes and makes splashing sounds---- it even scares the fish away!!! It is AWESOME! I can't wait to try her on other Apps...I'm sure an Ipad will be one of our purchases this !! Thank you Sue for your information you kinda passed on to us.

 

[SueM in MN]

Oh my goodness...we tried Khelsey on using the Ipad for some Apps set up for Rett girls...My father-in-law bought my MIL one for Christmas...Khelsey LOVED it! She LOVES to play in water and there's one of a fish "pond" kinda thing and it shows fish swimming around...all you have to do is touch the "water" and it swishes and makes splashing sounds---- it even scares the fish away!!! It is AWESOME! I can't wait to try her on other Apps...I'm sure an Ipad will be one of our purchases this !! Thank you Sue for your information you kinda passed on to us.

Glad she liked it.

Here are some other apps she might like when she gets her own.

1. Piano Cats Free - this one has white cats and black cats that act as the keys on a piano. They ‘sing’ when you press them.
2. iDoodle Lite - a drawing app
3. Koi Pond - this is kind of like the one Khelsey liked with the fish
4. Balls - this one has a black screen and when you touch, it starts some colored balls moving around randomly. As they touch, it makes a sort of chiming sound as they touch the edges of the screen and then the ball bounces off the sides. Touching makes them move.
5. Bubbles - this one is listed on the Rettgirls site. It starts with a black screen. When you touch, it makes blue bubbles form on the screen. Dragging creates a stream of bubbles. You can either let them break by themselves just like soap bubbles or you can break them by touching them.
6. Draw Stars - use your finger to draw on a dark blue screen. Stars in different shades of blue and yellow will appear on the screen along with quiet chimes. You can make them into shooting stars which shoot out of the picture by touching them. This one has crickets in the background (It’s supposed to be night
7. Snowball - snowflakes fall from the sky. As they hit each other or the side of the screen, they make a gentle chiming sound and break into many small snowflakes. TOuching the snowflake does the same thing. It’s a nice gentle app.
8. ER ULtimate - this is just full of nice sounds. This is one of my DD’s favorites for before bed or for relaxing at the doctor’s office. It has a variety of prerecorded sounds and then you can make some mixes into those to make the sound file you want.
9. Ambiance - this is another relaxation sound app. This one is different because you can choose the high quality sound files that are downloaded. I love the walk in the Rainy French Forest myself.

Most of these are fairly inexpensive or free. Be careful with the free apps though. Some of them allow purchases or upgrades inside the app, which do cost money. So, make sure the wi-fi is off so that if she clicks something, it won’t buy anything (You also have to put in a password before anything is actually bought).

There are also some excellent apps for communication that are listed on the original website I pointed you to.

 

[billwendy]

AWESOME information!!! I may go on a hunt for a regular 'ol backpack for her wheelchair. We are still waiting for her insurance to approve her wheelchair and hoping we get it all approved before our trip. We've always just rented one when we go places plus her walking has become so unsteady lately it's time for one.

I work in the wheelchair department at our local Childrens Hospital. What kind are you going for? It usually takes a few months for all the letters of medical necessity and insurance approval and stuff before you get your actual chair. If your trip is getting close and you dont have it, I'd ask the company you ordered from if they have a lightweight wheelchair you could rent or borrow. A nice Quickie or Invacare would be so much lighter and easier to transport than the typical "hospital style" chairs available at the parks and stuff - they are so heavy! Or even if they had a Convaid Cruiser you could borrow maybe????

Cant wait to hear when you are going!!!