So, who do we have on board?

[LibertyTreeGal]

Okay, share if you want to, I just thought it might be nice for folks to be able to look down the list and see what expertise we have available.

And I can't say enough how thrilled I am. I've had a wretched 24 hours and this is just so wonderful to see up and running. Thanks to our moderators (yes, you belong to us now) for giving your time for this and to John and the staff for setting this up.

My name is Tyler, but I go by TeeDee because otherwise everyone thinks I'm a guy. One of my 6 year old twins, Andy, has spina bifida, hydrocephalus, chiari malformation, clubbed feet, total incontinence, and ADHD. I am willing to chat with anyone concerning treating ADHD with diet, or any of Andy's other challenges as part of the WDW experience.

For the record, he has just as much fun at WDW as anyone else does (more, maybe...)

But we'll be gone until early December so no answers until then.

[alaMode]

My name is Tess and my DS Jack is 7. He has cerebral palsy (left hemiplegia), epilepsy, ADHD, and must use a g-tube for nutrition. Jack also uses a communication device. Jack is our only child.

We visited WDW in April 07 for Jack's birthday and will be returning in April 08 for more celebrating.

I learned so much on INTERCOT before our last trip! We had a wonderful time due the preparation and planning I was able to do using the information I received here.

I wasn't a huge disney fan before we went in April 07. I just figured Jack would enjoy the experience and that would be enough.

Needless to say, I ended up enjoying myself very much, mostly because Disney made it so effortless for our family to enjoy the parks--special needs and all!

Now I'm hooked!

Tess
Poly 07
Poly 08 (and 09, 10, 11...)
Maybe a cruise or 2 as well!

[pugslave]

Hi I'm Barb, aka Pugslave. Our only child is 8-yo daughter with Asperger syndrome (Autistic spectrum). We have been to WDW many times with her and she LOVES it. A lot of cool stimuli for her. I'm very excited about this new area and I'm looking forward to many helpful hints!

[dpamac]

I'm Gary. I'm an insulin dependent diabetic (nearly 25 years), so I have major food issues at WDW.

In addition, I have experience in elementary education, specifically working with kids who have ADD and ADHD. Plus, for the last twelve years, I've been developing college textbooks for several major publishers (you'd recognize the names) and one of my areas of specialty is adapted physical education.

[Jenemmy]

This is really so great! Love that Intercot accomodated us!!

My name is Jen and I have 3 children....DS11, DS9 and DD2. My 9 year old son has full blown, classic autism...I would classify it as moderate to severe. He is an absolute, gorgeous little doll -- but that is just Mommy's opinion!

I figure I wouldn't be walking the road if I weren't meant to help someone else along the way, so anytime anyone needs or wants to talk,vent, ask questions -- please don't hesitate. I guarantee you that I understand!

Also, My younger sister had Cerebral Palsy, so I have been exposed to special needs my entire life. I tell ya, these kiddos have more to teach us than anyone else in the world! And, if you ask me, they are closer to perfection than I will ever hope to get.

Take care, all

[Strmchsr]

Hey, everyone.

I know you know me from my weather posts, but I also have an insulin dependent diabetic 7 yr old son. On top of that, being a pastor I help people with special needs all the time, and my wife's undergraduate degree is in child life so she spent several years working in the hospitals with children with special needs. I look forward to everyone sharing their expertise and ideas!

[Mickey'sGirl]

Hey Howdy Hey! I'm Jennifer. I have Rheumatoid Arthritis, and am the working mother of two autistic sons. DS9 has Asperger's and DS3 has Autism Spectrum Disorder. My mother is also completely disabled by her Rheumatoid Arthritis and is an amputee. We have had numerous wonderful holidays at WDW and look forward to learning from all of you, and sharing some of our experiences.

[quicksand]

Hi I'm Sandra. My 7 year old daughter has moderate to severe Autism. She is totally incontinent has very limited communication. She only knows 4 signs and she gets them confused. She has been to Disney twice and had a great time. When I took her to our local fair back in October she hated it. We have a trip to Disney planned for Dec 08. Now I'm not sure if we should go now because she hated the fair so much. I'm not sure what we should do.

I am having a problem with getting her to sleep through the night. Her doctor put her on medicine, but it made her crazy. She would wake up in the middle of the night screaming and banging her head on the floor. I took her off the medicine because it didn't help. Now she goes to bed late and gets up super early. She goes on about 4 hours of sleep a night. My family and I are drained (I also have a 10 year old son and 8 year old daughter). Does anyone have any other ideas?

[Mickey'sGirl]

Now she goes to bed late and gets up super early. She goes on about 4 hours of sleep a night. My family and I are drained (I also have a 10 year old son and 8 year old daughter). Does anyone have any other ideas?

Hi Sandra! I don't know from experience, but I have been told that a deep massage and some "white" noise are often helpful for sleep disorders associated with Autism. My oldest son does not have problems sleeping, but I have found that on nights that he has been particularly stressed, he will have put on the little fan next to his bed. He says that it helps him sleep. for some answers!

[TheDuckRocks]

Hi, everyone! I'm Kay and just maybe the oldest Intercotee posting on a regular basis. I have psoriatic arthritis and other health issues that's makes walking difficult. I spent about 10 years not going much of anywhere because of this. Thank goodness for Disney and their understanding of how to make travel doable for guests with special needs. I am now able to get around the use of an ECV and am expanding my travel plans far into the future and to many different places.
I will be keeping an eye out on this forum to help anyone who needs info on moblity issues that I have run across and the answers I have found.

[Hayden's Dad]

My name is Kyle.

My son was diagnosed with a terminal neurological disorder called Krabbe disease when he was 13 months old. The disease is supposed to be terminal by the age of two. He is now 22 months old and doing well. He is fed through a feeding tube, on medication for seziures, and has apnic episodes (periods of not breathing normally or at all)

He has severe lack of motor skills and is basically paralysed. He uses a wheelchair/stroller called a kidkart.

We have experience with Hospice and KidsPath (we have a fantastic team)

Intercot has been a wonderful outlet for my wife (Eva) and myself, and we have gotten so much help from everyone here, and I would be honred to help or give any kind of advice I have.

Thanks Intercot!

[DawsonAR]

Hello everyone. I'm Melissa. I have an 8 year old daughter with CP. She is in a wheelchair and can't do really anything for herself. She is a happy child but there is so much in life she misses out on. She is the happiest at WDW. We try to take a couple of trips a year just to see her smiling face. She has only a few words she can say and Disney is one of them.

I'm glad this thread is open. We have had so many questions over the years.

[Tink&Goofy]

Hi Everyone!
My DD13 is profoundly deaf. She has a cochlear implant, and with ALOT of early help, has learned to speak (quite well, I might add). Some of you met her at the meet in October (and probably didn't even realize she was hearing impaired). Although we have come a LONG ways, we still have (and always will have) issues with processing information.

Technology has done so much for her, and there is so much available! The technology is constantly improving, as are the assistive devices (like captioning) that are available. I'm happy to share any information I have!!

[mttafire]

i just wanted to say how nice it is to have this board going. We have 2 children (2.4 y.o.DS and 3 monthsDD) So far we dont have any issues that we know of. Its nice to know that if we do-
We have a place to come to chat.
Regards, Shawn

[Nate's Grandpa]

Hello, my name is James.

I have had diabetes for 30 years, taking insulin for the last 10 years (lantus & humalog).

As many of you already know, my grandson Nate has Autism. I really don't know enough about his condition to classify him. He just turned 3 and is still not speaking in sentences.
However, he say and sign the whole alphabet.

Sandra, we have had the same sleep problems with Nate - 4 hours seems to be all he requires.
His speech therapist has a 12 year daughter with the same sleep issues, she uses Melatonin.
This is a non-prescription sleep aid she has been using for over a year. We give Nate half a pill every night right before bedtime. I don't know if this will work for you, but it does work for us.

Hayden's Dad, I think about you and Hayden often. Please keep us informed of his condition.

[merlinmagic4]

I'm here too!

My 10 year old son was born with chronic kidney failure and was transplanted almost exactly one year ago! He is doing very well and we're hoping for a good 20 years (or more) from the kidney he received from his dad.

He also has a severe lung condition that is as yet not firmly diagnosed. The closest his pulmonologist has come is a diagnosis of cast or plastic bronchitis. He is treated with a new treatment they use for cystic fibrosis patients and it works fairly well. He gets very sick with this a couple of times a year but it seems to be getting less frequent and more manageable.

He had a wish from the Make a Wish Foundation in 2005 and we went to Disney. It was that trip that made me fall in love with Disney. We had gone once in 1998 when someone gave us a timeshare week to use and we enjoyed ourselves but never really thought much about going back. After the wish trip I was determined to go back (again and again!). I looked into DVC but had to "settle" for a timeshare just outside of Disney. It was an amazing trip and I'd love to see more "Wish" kids on Intercot.

Looking forward to getting to know all the previous and future Intercotees who will be hanging out in this forum!!

[ibrowse17]

Hello all!
My name is Herb, and my DW Holley has epilepsy. She has a Vagus Nerve Stimulator (VNS) for this condition, along with a ton of medication. Prior to our first trip to WDW, we had no idea what the best way to enjoy the parks would be for her, or what rides she could not ride because of her implant. No one had answers for us, so being the brave trooper she is, Holley attacked everything and found the answers. We have been 3 times now, with 2 more trips on the books. Anything we can do for the goods folks here, please ask

By the way, I forgot to mention that Holley and I work at the same high school where she does a great job teaching Special Needs students!!

[Jenemmy]

She goes on about 4 hours of sleep a night. My family and I are drained (I also have a 10 year old son and 8 year old daughter). Does anyone have any other ideas?

Oh boy, Sandra -- I have sure been there, done that! When my Travis was younger, I was always amazed at the energy he could run on with only a few hours sleep.

Let me tell you, that he has improved GREATLY with age. It is now unusual for him to wake in the night, and when he does he stays in his room and generally goes back to sleep on his own. We had a combo of things that worked for us.

First off, Nate's Grandpa mentioned Melatonin and it has been a lifesaver for us! We use the liquid form at the health food store and just mix it in a glass of water at bed time. Melatonin is not designed to KEEP you asleep, but rather calm you enough that your mind allows you to sleep. Trav's specialist recommended it and we use it just on nights that he seems especially wound up. Works wonders.

Secondly, i also agree with Jennifer that sometimes they just need a little noise. I have allowed Travis to have a TV in his room. I turn the volume down to 1 or 2 before he goes to sleep and he knows that if he wakes and can't sleep, he is allowed to turn his TV on, but not turn the volume up or change the channel (we keep it on Disney channel, of course!) I think this is what started him on staying in his room when he woke up. For a while, the TV would be on each morning when I came in to wake him...now, maybe once or twice a month I catch it on.

Third -- I would suggest not changing anything just because your daughter is up. Travis would get up at 3:00am and want me to make him breakfast. I told him no way -- breakfast was not before 6:30 or 7:00 and absolutely would not let him leave his room before normal waking hours. It meant me sitting in there with him, or lying in bed with him but he learned. I would tell him I loved him, but we were not going to chat or get toys out -- I would only snuggle him.

Finally, if I attempt putting him to bed before 9:00, I can be assured he will not make it through the night.

We have come a long way since the days of crying from 2 - 5 am!!! Hang in there and best of luck!

[Jenemmy]

Hayden's Dad, I think about you and Hayden often. Please keep us informed of his condition.

Same here, Hayden's Dad -- your family is very often in my prayers!!!

[Hayden's Dad]

Hayden's Dad, I think about you and Hayden often. Please keep us informed of his condition.

Same here, Hayden's Dad -- your family is very often in my prayers!!!

Thanks guys everyone here is in mine as well. Here is a little extra pixie dust jsut in case anyone could use it.