PDA

View Full Version : So, who do we have on board?



LibertyTreeGal
11-20-2007, 07:23 AM
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 :mickey: 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. :magic:

alaMode
11-20-2007, 08:03 AM
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
11-20-2007, 08:30 AM
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
11-20-2007, 08:40 AM
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
11-20-2007, 08:48 AM
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! :secret:

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 :mickey:

Strmchsr
11-20-2007, 08:49 AM
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
11-20-2007, 09:12 AM
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. :mickey:

quicksand
11-20-2007, 09:31 AM
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
11-20-2007, 09:39 AM
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. :pixie: for some answers!

TheDuckRocks
11-20-2007, 09:56 AM
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
11-20-2007, 10:26 AM
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
11-20-2007, 10:28 AM
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. :thumbsup:

Tink&Goofy
11-20-2007, 11:26 AM
:hi: 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
11-20-2007, 11:45 AM
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.:thumbsup:
Regards, Shawn

Nate's Grandpa
11-20-2007, 11:46 AM
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
11-20-2007, 11:48 AM
I'm here too! :wave:

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
11-20-2007, 12:43 PM
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:thumbsup:

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
11-20-2007, 12:58 PM
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
11-20-2007, 01:01 PM
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
11-20-2007, 01:16 PM
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. :pixie:

KODABEAR
11-20-2007, 02:21 PM
Hi,:cowgirl: Our 12 yr old Granddaughter is at the level of a 5yr. old with a very short attention span. She loves WDW, hoping to get tips on best attraction's, time out area's etc. Thanks, Grandma :knit:

ElenitaB
11-20-2007, 03:20 PM
Hi, everyone! I'm Ellen and I've been battling cancer for six years now, have had multiple surgeries and deal on a daily basis with fatigue, mobility issues and medium-to-severe neuropathy due to adverse reactions I've had to certain chemo drugs. We started visiting WDW prior to my initial diagnosis and since then, I've learned how to best travel with the limitations I now face.

At my workplace, I'm very active with what we call our AccessAbilities network, and work with people with a wide variety of chronic conditions and physical limitations. It is wonderful to see the same awareness here in my "other job."


This is really so great! Love that Intercot accomodated us!!
It's not that INTERCOT accomodated us! It's that INTERCOT is a COMMUNITY first and foremost, that welcomes all types of people, united by our passion for all things Disney! I think the other mods will agree that it doesn't matter how we get here, but that we ARE here! If we can share information about where the best dining spots or plushest towels are found, we most certainly will share tips we've garnered about travelling to our happy place. This forum will provide us with the opportunity to have more focused discussions about how best to do that!

:rocks:

offwego
11-20-2007, 03:34 PM
Our focus has been around dealing with mobility challenges (my mom has used a scooter for her last few trips do to hip surgeries). And the level of ride "bounce" that she can handle as a result.

Marilyn Michetti
11-20-2007, 03:44 PM
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.


Well, Kay, I THINK we had this discussion before, but I don't remember which of us is older. We're both near the top of the heap, age wise, and regularly posting.

I'm Marilyn, and I have Multiple Sclerosis, and severe arthritis. I LOVE Intercot, and will ahppily try to answer any questions about getting around WDW, (or DLR), on wheels.

:thumbsup:

dlpmikki
11-20-2007, 05:49 PM
Hi, I'm Mikki. My husband Andrew, who some of you may have met at the meet, is legally blind by UK standards. He can see a little (something like he sees at 2 feet distance what I would see at 60 feet) and is totally color blind. This is since birth.

He has also had two kidney transplants. The first did not take properly but the second has been going fine for 28 years now! Just incredible! Inbetween the two his bones became very brittle and he actually lost 4 inches of height so has a slightly odd look and bent back. He also has some hearing loss, but maybe that is just the wife talking who says the husband never listens! ;)

He really enjoys Walt Disney World.

Dznygrl79
11-20-2007, 06:27 PM
Hi all! My name is Kat and I wanna say thank everyone for this forum, I have hypertension and am partialy Deaf. And Disney is my favorite vacation spot because they are so wonderful to everyone and and they accomodate most anything.
I am willing to answer anything I can for people who need help with these two disorders. I am going to the world Dec 7-15, Mar 20-27, and April 20-25 so as long as I am not there I will answer.

merlinmagic4
11-20-2007, 07:04 PM
He has also had two kidney transplants. The first did not take properly but the second has been going fine for 28 years now! Just incredible! ! ;)


Wow, congratulations!! 28 years is a long time and I sure hope my son's lasts that long! Who knows, by then they may be creating new kidneys from our own cells and we won't need donors anymore :thumbsup: We made it through the first year so it's looking good right now!

LibertyTreeGal
11-20-2007, 07:20 PM
Hi all! My name is Kat and I wanna say thank everyone for this forum, I have hypertension and am partialy Deaf.

Howdy, this is my first trip to WDW since being diagnosed with hypertension so I am interested to see how well I can keep my levels down on the trip.

Dznygrl79
11-20-2007, 07:40 PM
Well its not easy but it is not impossible either. For me its a lot of looking at menus before we select places to eat, but also knowing what I just won't be able to ride.

I was diagnosed a few years ago and during our first trip rode everything, but at that point I wasn't on any meds. The last trip we went on I was on an ACE inhibitor and that changed a lot for me. It took me a while to realize that I was getting incredibly dizzy after the rides from the meds. Now, for me, that was the only side effect but my doctor said to take it easy no Mission Space, or ToT, or Rockin Roller Coaster.
I just went on a pretrip check up and my numbers are good (how I don't know when I keep reading posts here and getting increasingly excited!)
Also I'm sure you've been told but watch what pain relievers you use they can push you up a few notches. By the end of the day I usualy have to take something for my knees or head from the noise, being able to hear out of only one ear in loud places does funny things to ya!

If you need help finding menus let me know!

MsMin
11-20-2007, 10:16 PM
My name is Beth and I'm a single mother of 3 adult kids. I'm very fortunate to have very healthy kids who suffered a severe trauma as children and are all ADD combined type but all college grads so there is hope! Has anyone here ever read the studies on ADD symptoms and violence or trauma? There is a pretty high correlation.
Anyway, I will try not to get too technical or use clinical terms ad nauseum and will try to make this brief... I have my Master's in Psyc w/ a strong background in Neuro psyc and my master's Thesis was on Eating Disorders. Before obtaining my master's I worked w/ Hospice development (primarily fundraising and promotion but very involved with the patients which brought me back to school where I worked at a developmental clinic.
I've worked on an evaluation team for children for the state and SSI (disability benefits). Then I was a program director for a program called Wrap which was designed to help families stay intact but I also had about 15 disability clients on my caseload (waiver program for those familiar). I supervised an average of 23 workers who provided services in homes so I have a lot of experience with problem solving and family struggles and communication. I can't think of a disorder that I haven't seen.
Currently I'm trying to finish my PhD and I have been working with coping and Post Traumatic Stress Disorder.
I also have older parents (since I'm no spring chicken;)) My dad has been a diabetic for 25 years, so was my gf and I know I have symptoms and have been checked regularly. I agree that WDW could do a lot to help diabetics and their menus and available foods... My parents also have limited mobility. My dad has had 3 strokes and has problems w/ balance and gait, speech (wernicke's aphasia) he wants so badly to go back to WDW but we have trouble managing him there:( so here you can help me:thumbsup:and my gm died last Dec. but suffered from dementia so I have experience there too.
So I'm here to listen, of course I prefer to give you options and let you chose what works for you or what is best because every family is different. :pixie: to you all....

TooGoofy
11-21-2007, 08:25 AM
Hi All!
First, my prayers and a lot of pixie dust go out to all of you who are traveling a harder path than I am. God bless you all! :pixie:

I have been diagnosed with a mild to moderate case of Crohn's disease. This requires me to watch what I eat...in my case, fiber is bad! It's not too hard to find good stuff to eat at Disney, but I do have to ask for plain white rolls rather than multi-grain. The medication I am on (Imuran) caused fatigue and some dizziness.

Dave, my better half, is a stroke survivor. He is also on lots of blood pressure meds (stroke caused by undiagnosed hypertension...it really is the silent killler!). He is easily fatigued, but is doing great right now.

I'd be happy to share information with anyone who has any questions.

dlpmikki
11-21-2007, 09:33 AM
Wow, congratulations!! 28 years is a long time and I sure hope my son's lasts that long! Who knows, by then they may be creating new kidneys from our own cells and we won't need donors anymore :thumbsup: We made it through the first year so it's looking good right now!

I quite agree - things have moved on so far since he had his transplant. back in those days you were in isolation for a week and hospital for a lot longer than that. Now you are in and out in a couple of days. In another 20 years maybe that Star trek film scene will be true - give someone a pill and they regrow the kidney!

Here we go again...
11-21-2007, 10:16 AM
I am sure most of you know of me and my problems.... I am a whiner and post long whiney posts in the Water Cooler when I can't sleep and I am in pain...

Anyway, I am Angel. I was diagnosed with Juvenile Rheumatoid Arthritis at the age of 9. (I am now 44) I have been lucky that the RA has not affected my hands too much, but my knees are gone. I had knee replacement on my left almost 6 months ago but still have not quite healed. I also have OsteoArthritis and Fybromyalgia. I am also hypothyroid... wow, I sound sick.... Anyway, I live with cronic pain and the things that I find that help most are laughter and my happy place. I try to surround myself with positive people and laugh as much as possible... when all else fails, I book a trip to Disney World! :mickey:
I did have problems with hypertension but since I have lost 48 pounds I am now off of my heart medicine and blood pressure medicine. ( :clappy: )

My father has been battling cancer since 2003. He has managed to beat 4 different cancers that were supposed to be terminal. The latest cancer scares me... this time he has it in his lung and jaw bone.

It looks like we all have a lot of different illnesses. I am glad to see that we have a place where we can talk about it and offer help and support.

Jen (Mickey'sGirl) was a lot of help for me when I was going through some really painful RA days. It is nice to find someone that can relate to what you are going through and offer words of encouragement when you need them.
Jennifer, one of these days I have to meet your mom! She sounds like such an amazing person.

coloradowendyl
11-21-2007, 11:53 AM
Hi,

I am Wendy and one of the Magical Journeys TA's! In my "former life" I taught Special Needs for 12 years...everything from Learning Disabilities to moderately delayed/autistic, etc. My teaching background really comes in handy helping my clients who have special needs.

I am also the mom of two boys...one of whom has struggled with a blood disorder which causes him to have clotting issues! We have done WDW with very low blood counts as well as remission!

This forum is a great addition to the boards and it is looking like a great group of people with great information to share!

I look forward to "hanging" around in here!
Wendy

TheDuckRocks
11-21-2007, 12:13 PM
Well, Kay, I THINK we had this discussion before, but I don't remember which of us is older. We're both near the top of the heap, age wise, and regularly posting.
:thumbsup:

I'm 7 months older than you, Marilyn. Who would have thought I'd want bragging rights for being the "oldest" at this age.
Old ladies on wheels rock!

wdw_bound
11-21-2007, 10:13 PM
Hi there, I am Heidi, and my DD9 is a stroke survivor (in-utero). She is moderately affected on her right side (her official diagnosis is right hemiplegic spastic cerebal palsy - whew, what a mouthful!) and wears an orthotic on her leg/foot. She has stamina issues (both walking and standing), and when she gets tired, she is subject to "toe-drop" and general unsteadiness - there are times during growth spurts when I think we are single-handedly supporting the bandaid industry as she is very prone to scraped knees as a result of stumbling.

We use a Maclaren special needs pushchair in the parks, and it is wonderful. She can walk, but Disney wears her out in about 30 minutes, so she uses the pushchair intermittantly.
Other stroke/CP related issues that we deal with include sensory integration and hypersensitive gag and startle reflexes.

WDW holds a special place in our hearts for many reasons, but the primary one is that every CM we meet seems to go out of there way to make DD feel special/normal all at the same time. She still loves all the princesses, but has also discovered thrill rides - she has plans to get me on RNR in a couple of weeks :blush:

This is a great addition to intercot - thanks for thinking of it!

PeterPansMagic
11-23-2007, 02:00 AM
Im really happy to see that there is a forum just for special needs.

My husband has cerebral palsy. He walks differently. Hard to describe. He used to walk with a cane but now walks with a walker/rollater but in Disney will be renting an ECV from Buena Vista Scooters.

Im hearing impaired. I wear a body aid because I was born with out an inner or outer ear. I had reconstructive surgery to make outer ears. I talk really well but when Im in noisy places I have trouble hearing. People are amazed that I speak well and have balance. They cant tell Im hearing impaired either. Im also obese & will be renting an ECV when Im in Animal Kingdom & EPCOT.

Off topic but Im afraid of roller coasters.

SusanH
11-23-2007, 12:02 PM
I have not been here in awhile. This new section is nice. My name is Susan and I have an adult son Brian who at age 13 was severly brain injured in a automobile accident. Brian was in intensive care for almost 5 months at the age of 13. He is now 28. He is in a wheelchair, blind and has a feeding tube for water and meds. Brian surprised all the doctors and therpist by being able to eat. Brian could walk but due to the brain injury doesn't understand the concept of walking. Brian can only say a few words. He can only say things like I sweet, I hurt, and he call's me an OLD FART:blush:. "I don't know how he know's this......" Brian requires the care of nursing 24 hrs. This is covered by insurance. Brian lives at home with me. I lost my DH to cancer in 2003. At that time my DD moved back home and she helps with Brian when she isn't working at her job at the hospital. I also have another DS who is a truck driver and when he is home he also helps. I became a DVC member so we could take Brian to Disney and accomadate all his stuff(LOL) and his caregivers. When we take Brian to disney I have no problem with help wanting to come with us:D. We will be taking Brian to Disney again in November 2008 for 12 days. We find Disney to be very accomadating during our stay with Brian. Susan

DVC2004
11-24-2007, 02:49 PM
My DS, 10, has an autistic spectrum disorder and we've been taking him to WDW since he was 4. I'm happy to see this forum as a great resource and if I can be of any help to anyone please feel free to PM me.

disneydeb
11-24-2007, 09:34 PM
Hello everyone.:wave: I'm deb. I have taught middle school and elementary aged children for 30 years. About 20 of those years I taught special needs children. My students have dealt with mobility issues, autism, developmental delays, cerebral palsy, genetic disorders, learning disabilities and health impairments.
I have had a heart attack and a stroke. I had heart surgery to correct a physical defect in my heart that caused my MI. I am diabetic and hypertensive.
For years my doctors would not allow me to ride Rock n Rollercoaster, Mission Space and ToT. This past year, I was allowed to ride these thrill rides after a ten year hiatus! :yay:YAY!
I did all of the above during Intercot's anniversary bash!
Anyhoo, I hope I can help if I am needed.

Yes, Intercot rocks and so does its members!:thumbsup:

Sean Riley Taylor's Mom
11-24-2007, 10:29 PM
Hi All!
First, my prayers and a lot of pixie dust go out to all of you who are traveling a harder path than I am. God bless you all! :pixie:




Ditto!!

Hi Guys..I am Allison and I have three amazing kids. Sean (DS 10) has ADD.
My middle guy is Riley and he will be 8 next month. Our little Princess is Taylor and just turned 4 in October. Both of them have Asthma and allergies. Riley is severly lactose intolerant. That can be quite a struggle but can be controlled with medication.
Sean is in 5th grade and has been on Adderall XR since 1st grade. He is in a "main stream" classroom and is a wonderful student. He does have a 504 plan for time and a half for testing for those of you familiar with Special Ed. Our school tries to place kids with ADD/ADHD in inclusion classrooms if they can but, Sean does not meet the requirements to be classified , he is 504 so not technically a "main stream" student either so...he would throw the balance off. He has trouble staying on task, focusing and organization. Thankfully, we have had great success with is medication and he shows no signs of those during the school day. We have considered other options but, are not as knowledgable as we would like to be about those options. Any input would be great.
I have to agree with those that mentioned Melatonin. We struggled for years with sleeping issues with Sean. Our Ped recommended it two years ago and it has been a great help for him. He still has a restless night here and there but no where near as often as he used to.

I had my third knee surgery on November 6th. Our trip in September was the first time I had any kind of mobility issues. I spent a lot of time on benches with ice as my friend. I hope our next trip will be pain free.

Our family loves everything Disney. I've learned lots of great things here on Intercot.

MsMin
11-25-2007, 08:24 PM
Hi Guys..I am Allison and I have three amazing kids. Sean (DS 10) has ADD.
My middle guy is Riley and he will be 8 next month. Our little Princess is Taylor and just turned 4 in October. Both of them have Asthma and allergies. Riley is severly lactose intolerant. That can be quite a struggle but can be controlled with medication.
Sean is in 5th grade and has been on Adderall XR since 1st grade. He is in a "main stream" classroom and is a wonderful student. He does have a 504 plan for time and a half for testing for those of you familiar with Special Ed. Our school tries to place kids with ADD/ADHD in inclusion classrooms if they can but, Sean does not meet the requirements to be classified , he is 504 so not technically a "main stream" student either so...he would throw the balance off. He has trouble staying on task, focusing and organization. Thankfully, we have had great success with is medication and he shows no signs of those during the school day. We have considered other options but, are not as knowledgable as we would like to be about those options. Any input would be great.
I have to agree with those that mentioned Melatonin. We struggled for years with sleeping issues with Sean. Our Ped recommended it two years ago and it has been a great help for him. He still has a restless night here and there but no where near as often as he used to.
I had my third knee surgery on November 6th. Our trip in September was the first time I had any kind of mobility issues. I spent a lot of time on benches with ice as my friend. I hope our next trip will be pain free.
Our family loves everything Disney. I've learned lots of great things here on Intercot.

Allison, all of mine are grown and all have graduated from college but as our Dr. says at our house everyone just grabs an an adderall out of the basket on their way out the door. ;) I've attended seminars w/ Dr. Barkley, one of the leading Docs in ADD. so I can offer a lot from my experiences.
(for everyone) Remember that each ADD/ADHD child is different especially if there are other conditions- every child is not the same. One child may need one behavior plan while another needs a different one. Mental health is a little like cooking, some families need a little more spice while some families can't tolerate milk and others are vegetarian. It's an artform in knowing which blends are needed and a little trial and error. The wrong suggestion to the wrong family can be very damaging :(
I'm glad to see someone mention asthma b/c my dd has a lot of trouble with her asthma when at Disney especially in the more humid weather. She has had asthma since she was 1. The smells can often get to her especially in the shops with the fragrances and room fresheners.
Coke is our biggest friend at WDW, or any other drink with caffeine like coffee or tea. It's a great to stimulate to help the lungs stop spasming if needed for asthma or to help focus for ADD and someone forgot a med. Anyone else use caffeine as a substitute drug??
Christin is allergic to milk (triggers her asthma) but only in liquid so I don't have to worry b/c she knows not to drink it or have cereal.
We use Disney to recover from a traumatic loss and build new traditions and memories.....

Sean Riley Taylor's Mom
11-25-2007, 09:05 PM
Allison, all of mine are grown and all have graduated from college but as our Dr. says at our house everyone just grabs an an adderall out of the basket on their way out the door. ;) I've attended seminars w/ Dr. Barkley, one of the leading Docs in ADD. so I can offer a lot from my experiences.
(for everyone) Remember that each ADD/ADHD child is different especially if there are other conditions- every child is not the same. One child may need one behavior plan while another needs a different one. Mental health is a little like cooking, some families need a little more spice while some families can't tolerate milk and others are vegetarian. It's an artform in knowing which blends are needed and a little trial and error. The wrong suggestion to the wrong family can be very damaging :(
I'm glad to see someone mention asthma b/c my dd has a lot of trouble with her asthma when at Disney especially in the more humid weather. She has had asthma since she was 1. The smells can often get to her especially in the shops with the fragrances and room fresheners.
Coke is our biggest friend at WDW, or any other drink with caffeine like coffee or tea. It's a great to stimulate to help the lungs stop spasming if needed for asthma or to help focus for ADD and someone forgot a med. Anyone else use caffeine as a substitute drug??
Christin is allergic to milk (triggers her asthma) but only in liquid so I don't have to worry b/c she knows not to drink it or have cereal.
We use Disney to recover from a traumatic loss and build new traditions and memories.....

Thanks for the input.
I agree with everything you said. We are so pleased with how well Sean does on Adderall but, we are always open to new suggestions and input. We have been lucky that we have not had to go through trying many different meds, etc, to find the right match. Adderall worked from the beginning.
I like your cooking analogy...makes lots of sense.
Both my DD's and my asthma act up in Florida. We always go in September, which is really tough with the heat and humidity. We were so pleased with SSR when we stayed there. Usually we have issues with the rooms we have stayed in.
I have never made a connection with Coke and my asthma. Maybe because I drink it a lot on vacation..lol. Great thinking. :thumbsup:
I always make sure I bring more inhalers and meds then I think we will need. I had three Albuterol inhalers each for Taylor, Riley and I. Of course, their Singulair and Flovent too. Taylor uses a spacer for her inhalers so I brought two of those in case we misplaced one on vacation. I look like a medicine cabinet on vacation..lol. We were pretty good last trip.

Thanks again for your input!!

brown1442
11-26-2007, 06:08 PM
Hi all! :wave:

My name is Sarah and I have two boys on the autism spectrum. My oldest will be 5 in January and recently had his diagnosis changed to Aspergers. My younger son is 2.5 and has yet to be evaluated (appt in January) but is certainly on the spectrum as well.

We have a trip to Disney World scheduled for next week... Dec 3-9 and I can't wait!!! We'll be staying at the Polynesian. I hope and pray it goes smoothly.

merlinmagic4
11-26-2007, 06:48 PM
Hi all! :wave:

My name is Sarah and I have two boys on the autism spectrum. My oldest will be 5 in January and recently had his diagnosis changed to Aspergers. My younger son is 2.5 and has yet to be evaluated (appt in January) but is certainly on the spectrum as well.

We have a trip to Disney World scheduled for next week... Dec 3-9 and I can't wait!!! We'll be staying at the Polynesian. I hope and pray it goes smoothly.

:welcome: I hope you have a wonderful trip!! Don't hesitate to drop in at Guest Relations if you think they can do anything to make your trip go more smoothly. They are WONDERFUL at making sure families with children who have special needs have a fantastic trip :mickey:

nifty48
11-26-2007, 08:56 PM
Hi my name is Naomi and I’m Grammy to Jacob (4 ½) and Abby (22 Months). Jacob was diagnosed with Autism just prior to his third birthday. My daughter and I were Disney fans for many years before Jacob arrived and we were excited to share our love of Disney with him. We’re Florida residents with Season Passes and like to visit often. As we are learning about the world of Autism we are also learning how to share our love of Disney with Jacob who is now a total fan. It has taken some trial and effort and we are always ready to adapt but we have after many visits learned what works for us. We would love to share what works for us with anyone who has questions.:mickey:

brown1442
11-26-2007, 10:21 PM
Hi my name is Naomi and I’m Grammy to Jacob (4 ½) and Abby (22 Months). Jacob was diagnosed with Autism just prior to his third birthday. My daughter and I were Disney fans for many years before Jacob arrived and we were excited to share our love of Disney with him. We’re Florida residents with Season Passes and like to visit often. As we are learning about the world of Autism we are also learning how to share our love of Disney with Jacob who is now a total fan. It has taken some trial and effort and we are always ready to adapt but we have after many visits learned what works for us. We would love to share what works for us with anyone who has questions.:mickey:

I'd love to hear any suggestions that you have!!

nifty48
11-26-2007, 11:09 PM
I'd love to hear any suggestions that you have!!

Not sure what tips you’re looking for but what really worked for us was a variation of the “we are going to” folder. My daughter got a coupon clipper folder that you use in the supermarket. with your coupons. She created a “We are going to “front page with a place for a picture of a ride. In the folder she has pictures of all the rides. As we leave a ride she places a picture of the next ride on the “we are going to” page. It really helps with the transition from ride to ride. We had to carry him away from the Speedway cars to another ride one visit. The next visit we showed him the picture of the teacups after he exited the speedway cars saying “again, again”. Once he saw the picture of the teacups he jumped in the stroller saying “teacups” and off we went. We were amazed at how easily it redirected him. As I said not sure what hints you’re looking for but this was something that worked for us.

nifty48
11-27-2007, 08:50 AM
I'd love to hear any suggestions that you have!!

I forgot to mention the Guest Special Assistance Pass. You can get it from Guest Relations at any of the parks. My daughter brings a letter from her Doctor stating my DGS has Autism and this makes it difficult for him to wait in long noisy lines with lots of other people close by. Sometimes the CM asks to see the letter sometimes they do not. The pass should be dated to last the length of your stay so you only need to get it once and it's good in all the parks at Disney. If the lines are short you may not need it but it is great to have if the lines are crowded and noisy. On rides that have a fast pass lane you show it to the CM at the fast pass entrance and they let you in there. On rides that do not have a fast pass entrance we ask a CM what to do. Even with the pass and avoiding the lines we have had instances when my DGS just would not go on a ride. Something about it just scares him. So be prepared that something might turn them off to a ride. We have learned to just move on to the next ride.

Have a great trip!

Mickey'sGirl
11-27-2007, 09:01 AM
I'd love to hear any suggestions that you have!!
:hi: Sarah -- My oldest has Asperger's and my youngest has ASD. My best advice is to USE FASTPASSES whenever possible and to take breaks during the day. The Poly is such a great hotel and your guys are sure to LOVE hanging out by the pool there for a bit.

We have also had to avoid LIVE shows. The anticipation and waiting and staying in the seat and the volume is all too much for our children to handle (including Turtle Talk, unfortunately). We give our kids maps to hold/use at the parks. It gives them something to focus on, as the stimuli around them is sometimes far too exciting.

I hope you have a fantaublous holiday! :mickey:

Here we go again...
11-27-2007, 09:38 AM
Not sure what tips you’re looking for but what really worked for us was a variation of the “we are going to” folder. My daughter got a coupon clipper folder that you use in the supermarket. with your coupons. She created a “We are going to “front page with a place for a picture of a ride. In the folder she has pictures of all the rides. As we leave a ride she places a picture of the next ride on the “we are going to” page. It really helps with the transition from ride to ride. We had to carry him away from the Speedway cars to another ride one visit. The next visit we showed him the picture of the teacups after he exited the speedway cars saying “again, again”. Once he saw the picture of the teacups he jumped in the stroller saying “teacups” and off we went. We were amazed at how easily it redirected him. As I said not sure what hints you’re looking for but this was something that worked for us.

What a great idea!

tiggerifictwo
11-27-2007, 11:47 AM
Hi I'm melissa . I have a 4 year old son with mild MR ,adhd, SPD.We are saving for a big trip to WDW in 2011.

luvdiznee
11-27-2007, 12:43 PM
Some of you may remember from my post a few weeks ago, I have a 10 yr old DD who is a Type I Diabetic. She wears an insulin pump which is a good help. I try not to consider her special need, she will never eat anything sugar free. :secret:So thank goodness again for that pump. She does have asthma as well, to the point where we bring the nebulizer with us just in case. And she takes 3 types of medications per day for that. :( Good to know a thread like this is around.

duckhere
12-01-2007, 01:31 PM
I'm going to love this thread! I'm Rob, I have a daughter, 7, with Spinal Muscular Atrophy. She is wheelchair bound and needs help with pretty much everything, including eating and drinking. She tires very quickly but is such a trooper! Our first trip to WDW was in Nov 04, Make a wish sent us and we were addicted. I've spend the last 3 years planning our next trip and we leave tomorrow 12/2!!! It's finally here!

Kennywife
12-01-2007, 01:54 PM
I'm Anna Gibson-Farringer and I have IBS (Irritable Bowel Syndrome, possibly Celiac Disease. I stay on a gluten free diet for my condition and avoid drinking milk and eating eggs. I also have Catamenial Epilepsy, meaning I have seizures most often during my menstrual cycle. :( I also have metal plates in my leg from a crushed tibia femur bone.

I am married for a year and a half to a wonderful man. :dance: I work from home doing writing and research. :geek: I loooove to cook, watch tv such as cooking shows and shop online.

Despite my challenges, I strive every day to do my best and not live my life poo-pooing about my problems....well...most of the time.

My husband and I looove Disney and plan to go every two years. We have a trip coming up in late April. :tink: I never got to go till last year fro my honeymoon and plan to make up for all the years lost! :yay:

Walt Disney World 04/30/08-05/03/08 Carribbean Beach Resort
Disney Wonder 05/04/08-05/07/08--Two-year anniversary/birthdays vacation!

Walt Disney World 06/18/06-06/21/06 Port Orleans Riverside--honeymoon
06/22/06-06/25/06 Disney Wonder

merlinmagic4
12-01-2007, 02:03 PM
I'm going to love this thread! I'm Rob, I have a daughter, 7, with Spinal Muscular Atrophy. She is wheelchair bound and needs help with pretty much everything, including eating and drinking. She tires very quickly but is such a trooper! Our first trip to WDW was in Nov 04, Make a wish sent us and we were addicted. I've spend the last 3 years planning our next trip and we leave tomorrow 12/2!!! It's finally here!

:welcome: to another Make a Wish family!!! Glad to see you here and have a wonderful trip :mickey:

Von-Drake
12-03-2007, 01:56 PM
My son is 4 1/2 years old and was diagnosed with Mile to Moderate Autism just before turning 3. He has been to Disney 4 times and will be going for a fifth time next April for his birthday. He loves it. We even planned a spur of the moment trip this past August when after watching some playhouse Disney, he turned to my wife and I and said plain as can be: "I go to DisneyWorld?" (it could have been a statement, but the tone of his voice was that of a question.) We always make sure we tell the Disney person who takes our reservations and the last time we checked in, the Cast Member was great. He does have a hard time when he gets surrounded by a lot of people and so many conversations going on... it makes it very difficult to wait for a show and/or in line sometimes. He is getting better in lines if we are able to make sure we are constantly talking to him and he sees us talking to him, but if he loses that focus on us..... it gets a little tough. We did the Guest Assistance Pass in August and it was very helpful. We are debating about using it again, since he is getting better at waiting in lines. He LOVES the characters, even those he does not know the names of.

robyn221
12-04-2007, 02:20 PM
My 11-year-old son, Rhys, has autism. He was first diagnosed as having a severe language delay, but after a couple of years of intensive speech therapy, he still had issues with socialization and his fine and gross motor skills were also not developing normally. That's when we visited a pediatric neurologist who confirmed our suspicions that this was indeed autism.

Rhys is currently in the 4th grade (just like his 9-year-old sister Callie Jane). He spends a portion of his day in a regular classroom with an aide or his SPED teacher for reading & social studies. He gets one-on-one instruction for math, English, & science (only because it's easier to schedule the science around his adaptive PE this way). He uses a special keyboard for most of his writing assignments which beams the input directly to the classroom's computer for printing. In addition to the speech therapy, occupational therapy, and APE at school, we're still doing private speech therapy and tutoring in math, each one day a week. Unless you know him, you really can't tell he had a language issue, although his speech is still somewhat scripted. Rhys is Lafayette's foremost expert on dinosaurs & paleontology and will talk your ear off about the tyranosaurus rex and a number of other dinosaurs whose names I can't spell. He still has some difficulties with socialization and appropriate behaviors with others and making friends. It kills me to see him want to play & interact with other boys his age but not really being sure how to do it.

We took the kids to WDW twice in 2003 (once at Mardi Gras and again at Thanksgiving when a family member just happened to be getting married the weekend before on nearby Captiva Island) and again this year to celebrate Callie's 9th birthday at the end of September. We had a few issues on this last trip that we probably could have avoided with a little better planning (for example, being better aware of the CS options in EPCOT's World Showcase), but overall it was truly fabulous (of course, the best part was that neither kid had A CLUE we were going until we picked them up at school and they saw the suitcases in the back of their dad's truck! We're still patting ourselves on the back for being able to pull that one off!)!

Robyn

robyn221
12-04-2007, 02:27 PM
We did the Guest Assistance Pass in August and it was very helpful. We are debating about using it again, since he is getting better at waiting in lines.

I am of the belief that it is better to have and not need than to need and not have. On our last trip to WDW, we got a GAC for Rhys. Because we were there just after the free dining promotion had ended, the crowds were not terribly large and we didn't have to wait very long for much of anything, so we didn't have to use it. But it was nice knowing we had the card just in case.

Robyn:mickey:

crazykids
12-04-2007, 05:04 PM
Hello, my name is Theresa.

My oldest child (age 5) was diagnosed with mild PDD-NOS & ADHD just before he turned 3. He was in a special ed class focusing on autism at age 3 & spent two years going full time to school year round. This year he has moved up to the regular class w/ typical peers & has been without the aide since last spring! He is making so many improvements, but it is not without a lot of hard work on everyone's part. We too have been trying out different meds for about a year now, right now he's on Concerta and it has made an improvement. I can also vouch for the use of melatonin on days when it's hard for him to settle down to be able to fall asleep - works like a charm! Because of his sensory needs he is a thrill ride junky. The only rides he couldn't go on last time were RNR and the primevial whirl, but he is hoping to grow another couple inches by next summer!

My daughter (age 3) is suspected to have the ADHD, but the doctors are waiting a little while longer to make a final diagnosis. She was diagnosed with a sensory disorder & is very inattentive & hyper. My youngest daughter (age 2) so far is acting & doing everything she is supposed to & we are hoping that it stays that way!

The one blessing that comes out of having kids w/ ADHD is that they have the stamina to last in the parks all day long without taking a break. They love all of the big rides, where other kids the same age wouldn't dare ride. I've been going to Disney since age 3 & I love it more everytime I go! We just took the kids for their first trip this past September & they loved it! We ended up purchasing DVC while there because we know there will be many more trips to come - already have 3 planned for 2008!

I suffer from back pain I developed in a bad car accident about 12 years ago. It doesn't stop me from doing things, but I do sometimes have to rely on pain medication and a TENS unit. I also have a bad knee that I was told would need to be replaced. Since I'm only 34 that can't happen for a long time, so I just kind of have to put up with it.

I'd also be glad to help anyone with any questions they may have.

Von-Drake
12-05-2007, 10:59 AM
I have to agree about thrill rides for my son. The input he receives from the change in motion and the wind is great for him and always makes him smile. I took him in BTMRR this past August, even though he barely made the height restriction, my wife was concerned about me taking him on there. Two young college girls were in front of us in line and we started talking about whether he would be scared or not. At the beginning or the ride when you go in the dark he got right up against me and held my arm real tight, but once we got out of that and started whirling up, down and around he started smiling like crazy. The only other problem was the ride came to a complete stop in the cave where the rocks look like they are falling on you, and he got pretty upset, but about 30 secs the ride started moving again and all was fine. What was funny, was the girls in front of us, kept turning around and laughing at him having such a good time. It was so funny.

Hammer
12-05-2007, 01:57 PM
You've already heard from the John, Paul, and George of the moderating quartet, I guess it’s time for me to explain how I get to be the 4th member of the moderator quartet ;) . Soon after I was born, I was diagnosed with hydrocephalus and a shunt was placed at 4months (mind you, this was 1969 and they were just starting to handle this condition). I had a revision at 4 years old to lengthen the catheter and a new shunt at 20 years old, this time the shunt was placed in my right ventricle, causing me to wear a wig for a semester of college (boy, was that annoying). Unlike LibertyTreeGal’s son, I do not have any other neurological conditions besides the hydrocephalus, so for the most part people only know if I tell them. My only limitations were/are I was not allowed to participate in most sports in gym and I have a slight balance problem. So, I really can’t wear spiky heels (I was thrilled when chunky heels came back in style) and when I drink alcohol, my balance is affected before anything else. If I keep it to 2 drinks (which is what I do 99% of the time), I am fine. If I have more than 2 drinks and I am not eating food, You’ll noticed I won’t stand up for a while. For example, when we were at Jellyrolls for the Intercot meet and I had a 3rd Gin and Tonic (bartender made really good drinks) I was eating the popcorn like it was delicious (it wasn’t, but it was food) and stopped drinking alcohol 2 hours before last call. Also, I did not stand much until it was time to go at 2:00 am, and by then I was fine. There would have been some stories if I tried to move around too much :D ! I do realize I am fortunate that I have never had any of the learning or severe physical difficulties that affect many others with the condition.

Also, and only the moderators were aware of this before now, my mother is a type 1 diabetic since she was a teenager. She had only minor problems for over 30 years. After she turned 55, all the problems that can affect diabetics started to happen to my Mom. She went on dialysis in November 2004. She had a mild stroke in February of 2005 (actually while the Eagles were in the Super Bowl). In January of this year, my Mom received a donor kidney. It’s working like a champ and allows my parents to actually travel and enjoy retirement. The only lasting effect from her stroke is she has trouble steadying herself, for which she uses a walker around their house and a wheelchair when she goes out.

Dawneeeey
12-08-2007, 09:48 PM
So Hi!

I'm Dawn and I was diagnosed with multiple sclerosis in January 2004, a week after my 35th birthday.

Currently I have no symptoms (knock wood). But last January we took a 4 day trip to WDW and I really needed an ECV but I was being stubborn and suffered for a couple of days before I decided that being proud and stubborn really only hurt me, so we got the ECV and also a wheelchair at the airport. It was the best thing and I will not be stubborn about it again!!!

I have been to WDW twice since and haven't needed either, but I have to be really careful if it's got and muggy. It messes me all up. Taking breaks in the AC and drinking lots of water helps me lots.

Glad there is a forum that talks about this stuff!!!

If anyone has any MS questions, feel free to ask!

BrerGnat
12-31-2007, 01:07 AM
Wow, I just noticed this section. I'm observant, aren't I? :blush:

Anyway, I'm here to check in too. I'm Natalie and I have two special needs sons. Max is 3 1/2 and was diagnosed with mild (high functioning) Autism about a year ago.

Lucas is 21 months and completely non-verbal, so he has a pretty major speech delay. We hope he is just a late talker, but with a brother with autism, we're not taking any chances on waiting for therapy for him. Time will tell, but for now, his social behavior is very "typical", so we are optimistic that he is not on the spectrum.

Max, though, began therapy as a 19 month old with no language and now talks ALL day long. :) He is truly a great kid and he makes me laugh every day. He really loves life and is always in a good mood. He likes to discover new things and figure out "how the world works". He taught himself to read about a month ago, and read us "Go Dog Go" cover to cover the first time he opened it! He goes to special ed. preschool 3 days a week in a mild/moderate autism class. He loves preschool almost as much as he loves Disneyland! He recently became potty trained and we couldn't be more thrilled about that. :D

Max and Lucas are old pros at Disneyland. We are lucky enough to live about 15 min. away, and both went for the first time at age 4 months and have been going regularly (at least once a month) since then. Max is now an official AP holder. His AP picture is of him in his stroller and it's too cute! Max loves trains of all kinds. His favorite ride at Disneyland is the Steam Train and the Casey Jr. Circus train. He loves the teacups (spinning is a passion for him) and has recently discovered that the Matterhorn is a "fast train". :D He LOVES the Matterhorn. Mommy can't wait until he's tall enough for BTMRR, because Mommy does NOT love the Matterhorn. ;) (too bumpy for me) Max loves Disneyland, but doesn't really care much for Disney characters in general. It's all about the rides for him.

Lucas, on the other hand, LOVES LOVES LOVES Mickey Mouse. It's sort of strange how much he likes him. I don't know where it came from, but we go with it. The highlight of Lucas' life so far (I think) was meeting Mickey Mouse face to face for the first time in October. Prior to that, he was a very shy baby and we didn't dare approach the big characters with him. Lucas' favorite ride is the Carousel (the "horsies")

We did our first official family vacation at the Grand Californian for 3 nights in October. It went better than I thought it would, but it taught us some good lessons to be applied when we take a REAL trip. We did this as a test run, as Max had never slept in a hotel before (or anywhere besides his own bed, for that matter). We wanted to go to WDW, but we wanted to make sure it would "work" before dropping $$$ and flying cross country. We're glad we did this, as it really opened our eyes to what we can expect when we travel with Max. For one thing, we need at LEAST connecting rooms, or a DVC villa because Max had a VERY hard time falling asleep in the same room as the rest of us. I had to massage him to sleep every night, and the first night, he was up 3.5 hours past his bedtime! DH and I were exhausted the whole time. ;)

Our first trip to WDW is planned (tentatively) for April/May 2009. DH is military and will be deploying for 13 months in February, so we're going to WDW to celebrate his homecoming in 2009. My job during his deployment is to plan our whole trip. Right now, everything is worrying me, from the plane trip to which hotel, how many rooms, etc? I'll be on here a LOT in the next year, asking questions, posting my concerns, and hoping to keep my sanity.

LibertyTreeGal
12-31-2007, 09:35 AM
Our first trip to WDW is planned (tentatively) for April/May 2009. DH is military and will be deploying for 13 months in February, so we're going to WDW to celebrate his homecoming in 2009. My job during his deployment is to plan our whole trip. Right now, everything is worrying me, from the plane trip to which hotel, how many rooms, etc? I'll be on here a LOT in the next year, asking questions, posting my concerns, and hoping to keep my sanity.

hi Natalie! Have you looked into Shades of Green? If I were you I'd get with Magical Journey's (our sponsor) and let them price out the trip a couple of ways, but Shades of Green (near downtown Disney) has deeply discounted rooms for Military families :D so you might want to give that a look. Magical Journeys doesn't cost a cent and they can save you a ton of money.

Von-Drake
12-31-2007, 02:28 PM
Hello Natalie,

I agree with LibertyTreeGal, I would look into the Shades of Green. We stayed there a few times and will again in April of 08. Thanks to my dad being retired military. It is a nice place and pretty quiet. I know it has helped when our son with mild to moderate autism needed some down time. Less than a 5 minute walk to the poly for the monorail, but they even have their own courtesy shuttle (golf cart) to take you closer to the poly even faster. They do have their own buses, but a little longer wait in between the bus times. Still, I would encourage you to look into it as soon as possible and see about reservations, they seem to book up fast. best of luck and keep us posted how all the planning goes.

tinklover
12-31-2007, 09:16 PM
My name is Beth and I'm a single mother of 3 adult kids. I'm very fortunate to have very healthy kids who suffered a severe trauma as children and are all ADD combined type but all college grads so there is hope! Has anyone here ever read the studies on ADD symptoms and violence or trauma? There is a pretty high correlation.
So I'm here to listen, of course I prefer to give you options and let you chose what works for you or what is best because every family is different. :pixie: to you all....

7 years ago was clinically diagnosed with severe depression reacuring, adult adhd, Post Traumatic Stress Disorder,OCD and mild agoraphobia. all of this was due to the abuse I recieved as a child according to my doctors. Disney is the only place I have no problem with leaving my house for and no anxiety with the crowds of people , it amazes me and my family and my docs. anyway I also have a son who is adhd, ocd, and odd. I am here as well if anyone has any questions or needs ideas on what will work for them or tehir children.

BrerGnat
01-01-2008, 05:51 PM
Thanks for the tips about Shades of Green. We're familiar with the resort. We actually ruled it out for this trip, since, ironically we will be spending the least amount of time at MK. Our boys (and us) are primarily going to WDW to visit the OTHER parks, since we go to the "original" Magic Kingdom almost every week. ;) This trip will be for the boys to experience something totally new for them. We plan to spend a lot of time at Epcot! I think Max will LOVE it there. Plus, DH and I love Epcot the most, so we are definitely staying in an Epcot resort, since we've never done that yet. Not sure which one yet, though. We will probably visit SOG for a couple meals, though and to look around for future trips. We're not so much looking to save money on this trip...it is going to be a big splurge for us (taking advantage of the extra $$ we will save during the deployment), so we are going to use it to stay in an Epcot resort. We plan to rent a car as well, so we can avoid the buses as much as possible.

I also used MJ for my last trip to WDW, so I will definitely be doing so again.

wdwfan#1
01-02-2008, 09:55 AM
hello, i read a lot of the boards, but rarely post. i am rachel and i have 3 kids ages 9yr,6yr,2yr. my 6 yr old daughter has mild autism and now my 2 year old son is being evaluated for the same thing. we have been to disney lots and every time we go, my daugher makes incredible progress with her speech and social interaction. i guess it's that disney magic :mickey: i think this new discussion board is awesome. alot of times, i feel like people feel sorry for me, but those without special needs children have no idea how much they can enrich your life. it makes you realize what the important things in life are and to forget about the trivial things. can't wait until our nex trip , sept. 2008.

IloveJack
01-02-2008, 10:39 AM
I can't believe I'm just getting around to this, but I guess it's high time I introduce myself (at least to this forum). :hi:

I'm Susan, a 27 year-old type-2 diabetic. I was diagnosed at 15, after being hit in the face by a softball traveling about 85 mph. The doc was really surprised to find a 15 year-old type 2, but later decided it was shock-induced. 11 years later, I was placed on insulin (this past Aug.) as I have become resistant to oral meds. (I'm allergic to sulfa, which really limits the oral meds I could take anyhow). I take two types of insulin: Novolog every time I eat anything, and Lantus right before bedtime. I was in complete denial (or apathy, more likely) during my college years, and now have slight neuropathy in my legs and have retinopathy (mostly in my left eye). :nono: However, since meeting my husband, I take much better care of my body, lost 35 pounds, and completely accept that I have diabetes, but it doesn't have me!

My DH (22) has cerebral palsy, but it is so slight that only he and I can tell. Only his feet give him away, and they're most often covered by shoes. The learning disability part of CP is what affects him more, and he still deals with horrible self-esteem problems due to it. It runs rampant in his family, so we know to watch for it in our kids. He also had a bad bike wreck 10 years ago and had to have a rod and screws placed in his leg. They were removed a year later, but he deals with major back, hip, and knee pain. He hides the limp rather well, unless he's tired, or has been walking too long. (It definitely showed up at WDW, but he wasn't about to stop! :) )

We have no kids, yet (we're working on that... :blush: ), but both my parents are type-2 diabetics, and both have had major heart surgery this year, (which go hand-in-hand).

I'm really thankful that the mods added this forum, as now that I'm on a sliding scale for insulin, I'm sure I'll have tons of questions on dining before our next trip. Until then, I'll try to help answer anything I can.

princessjojo
01-02-2008, 10:44 AM
Coke is our biggest friend at WDW, or any other drink with caffeine like coffee or tea. It's a great to stimulate to help the lungs stop spasming if needed for asthma or to help focus for ADD and someone forgot a med. Anyone else use caffeine as a substitute drug??

Hi everyone!!! This forum is great as I find that just talking about my boys is therapy for myself.

Firstly, their history...Both of our boys, Gray & Colbey, are today burn survivors. During their Christmas break 3 years ago they were moving farm equipment with my dad and passed some power lines. The voltage arced over and grabbed the equipment and electrocuted them entering their hands and exiting their feet. So we learned the hard way that Santa and the toothfairy and the Easter Bunny know's where the kids are all the time. Secondly, our younger son is ADD.

As a result of the burns, both boys have had too many grafts & surgical procedures (Gray had more than 25 in 6 months) to count and multiple amputations. We are fortunate on many levels though. The electricity, by God's hand, didn't harm ANY of their internal organs. And today, unless you were to see them by the pool or were to look very closely, you wouldn't see any evidence of their accident. We thank our doctors for that.

Anyways, Colbey is our ADD child who is on Ritalin. But we also find that caffine works for us as well. He takes his medication with a Mt. Dew at breakfast. We learned that caffine is a stimulant and with children, especially ADD/ADHD kids, stimulants work as opposites so it actually calms them. My mil doesn't get it and refuses to give him any caffine and then gets upset when she can't get him to calm down. We also found that one of the best things we've done for him, since he was diagnoses at the same time as his accident, was to hold him back in school 1 year. It was probably the hardest out of hospital decision we've made for him, but was the best thing we've done for him.

Oh well, that's the jist of our story. It pales in comparison to some of everyone elses. My heart goes out to each and everyone of you. Life sometimes appears unfair, but I have learned to embrace our condition and use it as a tool to help others who may one day walk in our shoes.

thejens
01-09-2008, 10:43 PM
Hi. I too just noticed this forum. It must have jumped out at me because my mother, who always goes to WDW with us, is having serious lung and breathing problems. A diagnosis/prognosis has not been made, but I am extremely worried. We do not go until the end of May and I'm not sure if she will be better or worse. She is only in her 60s and has always been able to keep up with her LIVELY grandsons! So far I am considering renting an electric vehicle (EVC??) and am so relieved we decided to stay at the Poly. We will have to figure out what to do about having oxygen delivered there? I have worked with senior citizens and their many needs my entire career 20 years plus...but it is so different when you are worrying about your own youthful and vibrant mother!!! I really have enjoyed learning about all of you and can tell that your children are just as lucky to have such positive and supportive parents as you are to have them! These challenges seem to make us realize that spending happy times together as a family really is all that matters. Thank you for sharing, it has helped me so much!

frakers
01-11-2008, 09:25 AM
Like some others, I am surprised that I've just noticed this thread. We have a 16 month old son who has Norrie Disease. He is blind with only slight light perception, (from what we can tell so far), in his right eye. He is at risk for developing hearing loss during childhood also. Actually, Norrie's appears to be one of those catch-all diseases. There is a laundry list of things that might appear but then again, he might "only" be blind. We adopted him at birth and no one had any idea that he was blind. It was thought that he only had nystagmus, or "googly eyes" as our then 4 year old called it. The nystagmus resolved, however, he is blind but honestly, it's hard to tell most of the time. Since he's never depended on his vision it's not like he's missing anything apparently in his mind. The OT who works with him to make sure he meets all his developmental milestones on time, (he has, except for the solely vision based ones), continue to tell us how impressed they are with him.
Ok, I know it sounds like I'm bragging on him and actually I guess I am but we are just amazed at the little guy. I mean, c'mon, he's been walking pretty well for a couple of months now and that's a huge deal and a leap of faith when you can't see anything!
Anyway, his first trip to WDW was last September and we were a somewhat worried that it could be a bit much for him to take in and only be a year old but he did just fine. Our next trip will be in April and we hope it goes as well but if it doesn't, hey, we'll cross that bridge when we get to it. He will be 19 months old then and kids that age can be kinda temperamental even if they don't have any special issues! :laughing:

LibertyTreeGal
01-11-2008, 09:37 AM
Nope, never heard of Norrie disease but it's very exciting to the forum to have someone who can speak to parents with children who are totally or partially blind.

Hey, and are there a ton of adoptive parents here on Intercot or what?! We ought to have a revolution and take over ;)

Briansmom
01-12-2008, 10:49 AM
[QUOTE=nifty48;1482431] My daughter got a coupon clipper folder that you use in the supermarket. with your coupons. She created a “We are going to “front page with a place for a picture of a ride. In the folder she has pictures of all the rides. As we leave a ride she places a picture of the next ride on the “we are going to” page. It really helps with the transition from ride to ride. QUOTE]

My name is Lela and we have two children, DD20 (still my baby even tho in 3rd yr college!) and our DS9 who has autism and dev delays, who is the light of my life. We are planning our first FAMILY trip (where all four of us are going). This will be Brian's FIRST visit to WDW and I can't even explain how ecstatic I am that we are able to take him on this trip! He has finally reached a point where he is READY to be able to handle all the music and bigness of our magical place. We took him to the state fair this past fall and he FINALLY absolutely loved it....so I knew immediately that it was TIME to take him to our favorite place in the world!
To understand us, you have to know that I grew up in Central Florida and worked at Magic Kingdom after high school and during some college before moving away. My love for WDW has been passed down to DD who is just as nuts about it as I am. (ahhh, what a wonderful feeling!) When she was in high school, her marching band went twice to perform and we accompanied as chaperones. There was no way in this world that Brian would have been able to handle all the stimulation at that time in his life, so he went to vacation with his wonderful grandparents. (How lucky we are to have such wonderful family support!) It was so hard for me to leave him behind but I knew it was the best thing for all concerned and we needed to spend this time with DD. That is why this trip is such a major milestone for our family. We are all so psyched to finally be showing Brian all the magic!
So that is our story and after long and hard deliberation, we have decided to stay onsite at POFQ. This is (still) hard for me to accept because I am the one in the family that looks to do things the least expensive way, and staying onsite is defintely not it!! BUT, I want to make Brian's first time as stress-free as possible for all of us and I firmly believe that this is the way to go.
Now, for my question for you, Naomi.....where did your daughter get all the pictures of the attractions to put in the folder. Our DS is basically non-verbal although he gets his point across most times! He doesnt have very good fine motor skills so signing hasnt been an option for him. BUT he does understand pictures and I had been thinking that I would take pictures of things as we went to them each day and maybe get a small printer to take with us, print them out in room, and then show him so he could tell us what he wanted to go back to see on another day. BUT, it makes more sense to have this all done before hand. (definitely lends to the stress-free part, eh?)
Sorry so wordy, everyone...but I wish you all could just FEEL a little of the excitement I am feeling about taking my little guy to the most wonderful place in the world! Thanks to Intercot for making this forum for all of our special families....we are blessed that they have thought of us, as we are blessed to have these children in our lives.

nifty48
01-13-2008, 09:38 PM
Now, for my question for you, Naomi.....where did your daughter get all the pictures of the attractions to put in the folder. Our DS is basically non-verbal although he gets his point across most times! He doesnt have very good fine motor skills so signing hasnt been an option for him. BUT he does understand pictures and I had been thinking that I would take pictures of things as we went to them each day and maybe get a small printer to take with us, print them out in room, and then show him so he could tell us what he wanted to go back to see on another day. BUT, it makes more sense to have this all done before hand. (definitely lends to the stress-free part, eh?)


Lela, the pictures are a combination of pictures we had taken and ones we copied off the internet. I put them in my Paint Shop Photo Album in a folder marked Jacobs Disney Pics and printed them on my home printer 16 to a page. We then laminated them and added Velcro to attach them. We live about an hour from Disney and are Season Passholders so we have a great opportunity to take pictures that we need. We have added pictures of him on the rides when we can. We also included pictures of him eating lunch in the park. When we go for the weekend we give him a social story about going to Disney and staying at the resort with pictures of the resort entrance and rooms. I would be glad to assist you in any way I can to get the pictures you need. PM me and we can talk further about how I can help you.

Last spring we stayed at POFQ and loved it. We generally end the day with supper in the room because after a day in the park we all need the down time. One of us generally runs down to the food court and brings back our supper. We were in building #4 right next to the food court which was perfect for us.

I am very excited for you and your family and would love to help if I can.:thumbsup:

ElenitaB
01-14-2008, 03:05 PM
Now, for my question for you, Naomi.....where did your daughter get all the pictures of the attractions to put in the folder. Our DS is basically non-verbal although he gets his point across most times! He doesnt have very good fine motor skills so signing hasnt been an option for him.
Lela, I thought Naomi's idea was brilliant as well. I'd be more than willing to create the "cards" for you (I have loads of pics of rides from over the years), if you tell me what rides you're thinking of visiting and what size you need them. :hug:

Briansmom
01-15-2008, 11:22 AM
Lela, I thought Naomi's idea was brilliant as well. I'd be more than willing to create the "cards" for you (I have loads of pics of rides from over the years), if you tell me what rides you're thinking of visiting and what size you need them. :hug:

The generosity of the folks on this board is unbelievable..... you have no idea how much offers like Naomi's and Ellen's mean to me. I will PM both of you to see what we can come up with.

Naomi and Ellen..... :thanks: You are both a :princess: to me.

Von-Drake
01-15-2008, 04:06 PM
This is an awesome idea. I might put one together for my son, and start showing it to him about a week or so before we go. I am sure he will get excited and start remembering once he sees the pictures, especially the ones with him on the rides.

Stitchahula
03-08-2008, 11:14 AM
brergnat have you tried teaching lucas sign language? My son William who is 5 next month is also severly speech delayed, by the time he was 3 he had only about 6 words you could understand. He started preschool so he could get language/speech and she taught him asl along with helping him find his words. It's been slow going but he's doing much better. They tested his hearing to see if that was an issue they looked inside his mouth to see if their was any reason physically that he was so delayed they had no answers he's just slow to talk. My advice is get everything checked and start on sign language it was such a huge help.
Ok now about William when he was 9 months old we went to his well baby appointment and my whole life changed. The doctor did the finger prick test for anemia and came back into the room to tell me she was getting us a ride to the hospital his numbers were low. It turned out they were scarey low he had a h/h of 2.3 and 6.9 he had "lost" over 80% of his blood. They told me he would die without an immediate transfusion and even then they didn't know. If they put it in to fast it could over stress his heart or he could have an allergic reaction to something in the blood. Here I was thinking the whole time I had a health son just kind of pale. Surprise. We were in the hospital for 5 days him getting transfused 4 hours on 4 hours off. He has a rare form of anemia call Diamond Blackfan
Anemia it is where the body doesn't make it's own red blood cells. He used to get transfused every month but for whatever reason he's gone into remission. With this illness you can pop into or out of remission for no reason but only about 11% of DBA patients go into remission so we're part of the lucky ones. They also have a higher rate of cancer than other people so we have to keep an eye out on this white cells too. He was just diagnosed with asthma the poor kid just can't seem to get a break. We go in a few weeks to get a blood test to check his numbers, we still have to do this every few months even though he hasn't had to have his tank filled in a year. Keep your fingers crossed that it comes back with high numbers.

Lori Anne
03-08-2008, 01:22 PM
Hello everyone!! My name is Lori, from chilly Cape Cod! Our 14 year old daughter, Rachel, has a rare genetic brain disorder called Aicardi Syndrome. She has a trach, g-tube, epilepsy, mental retardation, no purposeful movement, and is legally blind. She is SO happy at Disney!!!! We are in the process of planning our early December '09 trip!! anyone else planning to go then????
We also have a VERY active 7 year old son. My hubby and I have been married for 17 years, and LOVE vacationing at Disney!! Everyone is so accommodating there, to Rachel's needs! The first aid rooms are great for changing her (she's totally incontinent) and doing Chest PT, or whatever else needs to be done. We love the magic of Disney!!
Lori.

wilshade
03-09-2008, 10:57 AM
Hi all,

I am Wil and I work with adults with developmental disabilities. I have made several trips to WDW with the folks under my care. I've done one-on-one trips as well as group adventures.

The best general advice I can give is LEAN ON THE CAST MEMBERS! They have not let me down yet and they have stepped up in unexpected ways more times than I can count.

ryca1dreams
04-20-2008, 01:21 AM
I'm 39 and have a recent history of seizures. As soon as they started, I got medical help and was put on medication and continued to get help. I also was in good health and decent physical shape which probably helped.

Having seizures is not fun. So, if you or someone you know has one or signs of them, get help fast. If your doctor advises you, get on medication and stay on it.

I'm able to live a fairly normal life now. Love Disney - it's my escape.

HulaMinnie
04-20-2008, 08:46 AM
I'm Sue and I've been reading through the threads on this board and just enjoying all the wonderful information and support being shared here.

We have 2 children - DD8 and DS4. DS has ASD and is high functioning. Early intervention has been amazing for him this past year. Although he is really sensitive to overstimulation - especially sound, he loves Disney World and does well with some accomodations (ear protectors, stroller, GAC when needed, limiting our time in the parks, etc.)

I look forward to "talking" with everyone here!

Hayden's Dad
04-21-2008, 03:53 PM
At the age of 2 1/2 he all of a sudden started understand us and talking and walking and doing all sorts of things.

That is awesome!! just proof that miracles do happen.

HulaMinnie
04-21-2008, 04:59 PM
Wow, that is amazing, Dreaming_of_Disney247!

Bless you and your DS, too!

disneybelle5
05-20-2008, 03:42 PM
Hello all. My family and I just returned from visiting DisneyWorld May 11-17. We have a 4 year old son with High functioning Autism. He did so well there we were surprised. We had heard about the guest assistant card ahead of time and got one on the first day. That card was a life saver for us. We were able to use it as a fast pass and on a few rides (like Dumbo) skip the line. I know to some of you that seems like cheating, but a 45 minute wait is like 4 days in our world. We were able to use the GA Card in part of Toon Town...We found out that they were changing the rules to not allow autistic kids to jump the lines for the characters. I calmly explained that my little guy would not get to see mickey mouse if we had to wait in a line that was 1 hour long. My little guy simply can not do it. His melt downs are worse than a 2 year old after waiting for 10 minutes. When we spoke to the manager she let us through. I am encouraging all parents whether they are going or not to write disney and let them know the reasons why they should not change this policy. The more we write the more understanding people can become.
Thanks
Melissa

Ropachs
05-31-2008, 12:34 PM
Hi, my name is Lori. We have a DS6 who was diagnosed last year with Obsessive Compulsive Disorder. It's largely under control with medication, which has been a huge blessing. We also have a DD1 with Down Syndrome, she's doing wonderfully and thankfully does not have many of the medical (heart, digestive, etc) issues that often accompany Down's. We've have fabulous doctors and therapists, family and community and are SO looking forward to our WDW trip this October!
I've also been gaining quite a bit of information about Celiac Disease since my friend and her daughter were diagnosed last Fall. It's also something our DD is at a higher risk for.
It's wonderful to hear that so many with different challenges are still able to do so much including Disney!

OhToodles!
06-13-2008, 02:13 PM
I'm Gary. I'm an insulin dependent diabetic (nearly 25 years), so I have major food issues at WDW.

Gary,I noticed you were a type 1 and live in St. Louis. ME TOO!

I'm Kelly and have been a type-1 diabetic since June 1991. I was diagnosed at age 11 and my younger brother was diagnosed the following year. We have both been lucky and have taken good care of ourselves,so therefore have not been hospitalized for anything related to the diabetes since our diagnosis. I have been blessed with one baby boy so far and he is doing great - no NICU for him once he was born (this usually happens (going to the NICU) with babies born to diabetic mothers). I have also been wearing an insulin pump for about a year and a half now - got it before trying to get pregnant - and I LOVE it.

tinkerbellybutton
06-21-2008, 12:36 PM
OK, so I'm really not observant, I just found this post. I'm Traci, I have an 18 yo daughter who is affected by borderline personality disorder and an 11yo son who has aspergers (autism spectrum) I myself have Ehlers-Danlos syndrome, a rare disease that causes aneurysm (I'm getting to be a pro at being transfused), joint instanbility, skin fragilty, widespread joint pain (for which I will be on meds for the rest of my life) etc. I am deaf in my left ear after four deforming operations to my skull to eradicate an incurable infection and I think that's it, as if that's not enough ;) Oh, I also went through countless years of misdiagnosis, basically being told it was in my head untill I met my wonderful specialist who figured it out in an hour and sent me to the geneticist. I have found so many helpful people on INTERCOT especially when it comes to DS. I'm not thinking I can be much help to anyone, but we have taken both children several times to WDW and have had some experience with WDW resorts special needs, etc. I want to toss out a huge thank you to everyone who has helped me with DS and DD even if it was just to listen. THANKS!

Lori Anne
06-23-2008, 11:34 AM
Hello from Cape Cod!!
Lori here, our daughter Rachel has Aicardi Syndrome (seizure disorder, visually impaired, trach, g-tube, porta cath, non verbal, no purposeful movement). She is 13.We are planning our next trip for very late november into early december '09. She has been to Disney once since her wish trip when she was three. We tried to go thru Make-a-wish here in Mass. but they told us she was "too scrambled to appreciate anything" for real!!! so we were denied! we went thru GKTW, had a BLAST!!!! we are staying again at AKL. what a remarkable resort!! we will be coming down with my mother in law (yes, i know what you are thinking!!) she is terrific! has never been before! As I posted somewhere else, I went to the disney florist website,and would LOVE to have a beautiful tiara delivered to her while lunching at the cinderelle castle!!! it's on the "romance and anniversary" section at the website. Very pricey, but every day with her is special! and she IS a princess you know!! :blush: I would also like to bring down a small table top tree, mini ornaments, mini lights, and window clings, for decorating our rooms!! anyone have any other ideas?? thank you all for being here!!
have a MAGICAL day!!!! hugs to all!
Lori.

Ppufi
06-29-2008, 08:26 PM
Aloha all! My name is Sarah. 4 years ago, I was diagnosed with ALL, a form of cancer. I underwent over 2 years of chemotherapy. Last year, I relapsed, and had more chemo and a Bone Marrow Transplant. I am over 100 days out of transplant, and I am on isolation for the next year.

My mom also was diagnosed with breast cancer last summer.

I took my MAW trip to Disney in 2006, and my doctor is looking into a second one.
I am open to any and all questions. :)

dnickels
06-29-2008, 09:22 PM
I'm Dave, 29, completely paralyzed from the knees down and about 50% paralyzed from the waist down due to a spinal cord injury six years ago. I need a walker or a pair of lofstrand crutches to get around. It slows me to about 1/2 mph but I refuse to use a wheelchaair (it's good exercise so I don't end up getting fat). So I guess if anyone has questions about getting around with a walker or similar mobility questions just let me know and I'll try to offer my help.

Turk82
09-22-2008, 02:28 PM
I waited a bit to post on here, mostly because I didn't feel I had any ifo to offer, but I have been learning a lot and would be more than willing to answer any questions someone may have.
I had a major head injury in January of 2008 that left me with partial vision (legally blind) for several months. Then in June, my vision went completely out...I am now totally blind. I am currently at Guide Dog school training with my new "eyes", Jolene. I am actively (as some of you know) planning my Disney vaction for this November despite my disability, but I wouldn't say that I don't have my concerns! Thanks again for all your help....everyone on her has been amazing and so supportive!

luvdiznee
09-22-2008, 07:10 PM
:grouphug::pixie::grouphug:

EmISeeKayEeWhy
09-23-2008, 09:00 AM
Warning: The making of a medical journal pending...

I'm 38 with a minor case of cp on my left side.(with years of PT I have limited use of my left hand and can now walk with just a minor limp)

My wife is type 1 diabetic, had 3 heart attacks, congestive heart failure, failing kidney, and intestine injury.

My youngest DD(5) has type 1 diabetes (diagnosed at age 2) She is also insulin resistant, so she goes high and low at a second's notice.

peter's #1 fan
09-23-2008, 02:54 PM
Hi I'm a single mom to 9 yr old autistic son who also has mild mental retardation. We have been have great difficulty with aggression for the last 1yr.

2 princes and a princess
09-24-2008, 04:33 PM
Hi,
My name is Celeste. My DH, Nat, and I have three beautiful children. DS,5, DS, 3, and DD, 2. DS, 3, has been diagnosed with Autistic Disorder and ADHD, as well as Sensory Integration Dysfunction. We are huge DISNEY fanatics. We love, love, love everything Disney.:mickey:

J.C.&ALI'SMOM
09-24-2008, 06:41 PM
Hi!

I've been a member of Intercot for years but just pop in and out every now and again. I saw this thread and had to post.

I'm a speech language pathologist and have worked in the public schools for 16 years. I see a lot of "normal" (whatever that is) children who have articulation delays, but I really see a lot of special needs children. Currently I serve kids in our system from 2 years old to 8th grade.

I also have a child of my own who has experienced medical issues and delays of her own. My youngest child, Ali, contracted meningioencephalitis at 5 months old. She was taken via medflight to the closest PICU to us, about 3 hours away. We spent several days in a touch and go situation at that hospital and after 10 days we came home.

She ended up with a seizure disorder for 2 years after this illness and was on medication. After 2 years of wrenching visits to the neurologist every few months she was released from his care.

She went to PT, OT, and ST for years. Went to a Preschool at-risk program in our sped program in the public schools at 2 1/2. She currently is in 3rd grade and has attention issues. She has an instructional aide that she shares with another student. Her assignments/workload are reduced as a result of her IEP.

I think one of the reasons that we love WDW so much is the reactions that she had during those first early visits (her first trip was at 22 months). We both felt that she gained language during those trips and her attention improved. In any case, those are some of the best memories that we have.

handmaidenofprincesses
09-25-2008, 09:42 PM
Anyone else use caffeine as a substitute drug??

I do!!

Hi everyone, I'm Robin, my friends call me Bluebird (long story). I have moderate/severe ADHD and found out the hard way that I am massively allergic to methamphetamines (which happen to make up 99% of ADHD meds). I also have a disability in my right ankle thanks to a torn ligament that never healed properly. (hence my other nickname- "Gimpy" lol). Last but not least I was diagnosed with depression/suicidal tendencies at 16 (All better now, thank goodness) and depression seems to run in my family.

I spent a lot of time student teaching in a special needs preschool, and have worked extensively with special needs children ages 3-8. I m a psychology major.

I have also experienced a lot of other diseases/disorders in my family.
My niece and her mom have ulcerative colitis, so I have had a great deal of experience with that (unfortunately- its a scary disease!) My brother and my mom are lactose intolerant. Both my grandmothers, my uncle, and my cousin have/have had cancer. My grandfather died of Alzheimers last year (I also work with Alzheimers patients through my choir). My other grandfather had several strokes and heartattacks and died of Parkinson's disease.

Any thing anybody wants to know, I will help however I can. You can always PM me for any reason at all. I'm addicted to intercot, so I'll certainly answer!!

beksy
12-12-2008, 08:47 PM
Hi everyone! I'm a first year law school student at WVU in Morgantown, West Virginia and am from VA and 26. I've been to Disney around 10 times, most of the time with either my mom, my sister, or myself in a wheelchair. This next trip I'm trying an ECV (hopefully noone is injured!). I am not married but have been dating a guy for 8 years off and on (can't seem to keep it "off"!). My mom and sis (20) are my best friends and I love my cats. They're my only babies for now. I have charcot-marie-tooth disease which affects the muscles, especially in my feet, legs, and hands. I've had numerous surguries and wear a brace but its a progressive disease with no real treatment. I also have Bi-Polar Depression which is thankfully pretty controlled at the moment but I've been hospitalized 3 times. Disney is one of my main treatments! I also found out two weeks ago that I have Rheumatoid Arthritis and am dealing with the prednisone, narcotics, and other issues that go along with it. Mom has it too so I'm familiar with it and my mom and sister both have the depression. I also have poly-systic-ovarian syndrome which causes me a great deal of monthly pain and inconvenience. Most likely I can't have kids and even if I can probably shouldn't because of the medical issues and medications so adoption is in my future. I love kids! I'm happy to talk to anybody about any of this stuff or if you're just having a bad day and need to talk. I've been there! Intercot is a great support system! :thumbsup:

Nana
12-13-2008, 11:11 PM
Becky here. One of the oldie goldies on Intercot. I use to be around alot on Intercot, but due to several things going on in my lfe-I had to take a break. I tried to read the posts and keep up with everyone, but just do not have much time for posting. I am the Grandmother/Guardian of 2 boys ages 11 and 10. The 11 year old is doing well with everything except due to multiple medical problems as an infant, he can not throw up. If he gets sick or hits his head or anything that would cause him to throw up, he can die in 2 hours so it is very difficult to know exactly what will set him off. The 10 year old has Auperger and is easily overstimulated. I am also the Grandmother of 2 younger children who live with their Mom. One is 7. He was born with cancer and has had several reoccurences. In addition, the repeated tumors and surgery on his spine have left him with no feeling from the waist down. This was recently discovered when he fell and broke his left for the 2nd time in a year. He also has a life threatening latex airborne allergy. The allergy is severe enough that latex balloons in a restaurant or anywhere indoors can cause him to quit breathing. The other is 3. He is just too cute for his own good. Nothing medically wrong-just spoiled rotten. We have been to Disney several times. We own DVC. We will be going back in March. We have used the GAC at least 2 previous times and will be using it again this time. If we did not use the GAC, we would only be able to ride 3-4 rides a day at most since the 7 year old can not be in the sun very long and he tires so quickly that 3-4 hours at the park at a time is the most he can do without needing to go back to the room. If he stays outside for long, he passes out and requires a trip to the ER. Hopefully, I can help others and I can gain some great tips from here.

ElenitaB
12-16-2008, 04:23 PM
Hello, Nana! :hug:

I cannot believe that Brad is 11 already! Yikes!!! But then again, my DS just turned 13. :faint:

So good to see you posting and thanks for sharing your acquired wisdom.

Nana
12-16-2008, 06:03 PM
Yes, they do grow up fast. Good to be here.:mickey:

peemagg
12-21-2008, 09:21 PM
Hi all,

My name is Vicki and am new to being disabled. I have been diagnosed with RSD after surgery to my foot to fuse the bones in the arch. I don't know what I can offer as help, but I will try to help as much as possible.

I am new to the world of using scooters, but learning to adapt quickly.

I also have reflux of the kidneys.

stitchaholic
12-21-2008, 11:52 PM
hi guys,my name is shushy and i just recently became an intercot member,i used the site alot last year before my trip,and decided to join this year,we leave for the world january 26th. i am a single mom of a DD age 9 and a DS age 7,it has been a rough road with DS since the age of 4,he has been diagnosed with ADHD and ODD,last year was the worst year so far,he had adverse effects to any of the stimulant meds and became very anxious and violent,he spent alot of time out of school last year,it was a very stressful and confusing time for us,it is hard to look at your 6 year old and realize how miserable he is,how stressed he is,and i was having a hard time coping with having to work,and being called to come pick him up every other day,he was almost thrown out of day camp as well,thankfully i have alot of friends at the city who let him stay despite the behaviour issues. thankfully we foung a program run through one of the hospita;s here(montreal,qc) for children just like my son,he is now on strattera and with the behaviour modification therapy is doing quite well,it is amazing to see how far he has come.the program entails alot of commitment,but is worth every minute.
i have become a little disney obsessed and cannot wait until our trip,35 days and counting...:grouphug:

pjbs35a
12-22-2008, 07:48 PM
Hi, everyone! I'm Ellen and I've been battling cancer for six years now, have had multiple surgeries and deal on a daily basis with fatigue, mobility issues and medium-to-severe neuropathy due to adverse reactions I've had to certain chemo drugs. We started visiting WDW prior to my initial diagnosis and since then, I've learned how to best travel with the limitations I now face.

At my workplace, I'm very active with what we call our AccessAbilities network, and work with people with a wide variety of chronic conditions and physical limitations. It is wonderful to see the same awareness here in my "other job."


It's not that INTERCOT accomodated us! It's that INTERCOT is a COMMUNITY first and foremost, that welcomes all types of people, united by our passion for all things Disney! I think the other mods will agree that it doesn't matter how we get here, but that we ARE here! If we can share information about where the best dining spots or plushest towels are found, we most certainly will share tips we've garnered about travelling to our happy place. This forum will provide us with the opportunity to have more focused discussions about how best to do that!

:rocks:


Hellooooo, My name is Frankie. I was diagnosed with colon cancer in February, 2008 and just completed my 3rd follow up PET/CAT scan and am now cancer free. INTERCOT friends like Ellen and many others have made my journey much easier to travel. If you have not already realized it, INTERCOT is much more that a Disney related website. It's our home away from home.

Keep thinking positive thoughts!~

TiggeRia
12-22-2008, 08:30 PM
Hi-my name is Ria. My father was diagnosed with non-small cell, stage 3-b lung cancer in 1996 and given three months to live. Shortly after his diagnosis, be began a long course of radiation and chemo, eventually leading to the removal of his entire left lung. He was then told he had two years to live-and then five. He has been cancer free since that time, and 2009 marks year 13! We began going to Disney as a celebration of his 10 year anniversary-which was the first trip for him. We have been multiple times and will be heading back in April to celebrate his 65th birthday.

We have small hurdles to overcome with traveling--he is unable to walk for long distances because he becomes short of breath, so renting an ECV is necessary for him to negotiate the parks. He insists on parking his scooter outside the rides and walking the line along with everyone else because he insists that he "isn't disabled!" I tell him that most rides allow the scooter in the regular line, but he's stubborn. :) We try to avoid flying on airplanes due to the recycled air-he used to catch colds very easily which routinely led to pneumonia, although it has been many years since that has happened.

I'm not sure if I'll be able to help anyone out there who may have related situations or questions, but I'll be sure to try!

betteratmk
12-22-2008, 09:26 PM
:mickey: hi,I'm Trish, I'm a Type 1 diabetic with heart and central nervous system dysfunction, Disney can be a difficult place to visit with health issues but we love it!! I am also a former nurse educator. If I can help let me know,DS Tyler also has asthma and multiple allergies

BedknobsandBroomsticks
02-20-2009, 09:13 AM
Allison has asthma, severe animal allergies and pollen allergies. I also have a brother with learning disabilities. I worked with the developementally disabled for 5 years in a group home setting before starting my family. I have a little cousin Michael, with Downs Syndrome. If anyone ever wants to talk or anything about asthma, I am here and a good listener. Love and pixie dust goes out to all of you. Go to WDW whenever you can and ignore the clods. If I'm on the bus with you, I'll be the one smiling. :mickey:

TheVBs
02-22-2009, 02:38 PM
This is such an amazing, heart-warming thread! I started out just exploring, but knew shortly into it that I'd have to share our story too. I promise to give you the shortest version possible!;)

When my oldest daughter was 4 1/2 (she's 8 1/2 now), she got a really severe throat infection. Don't know if it was strep because they never tested, but it seems likely that it was. She was understandably quiet when she got it, but a couple days into getting treated, her personality completely changed. This joyful, outgoing, incredibly smart child shut down on us. She wouldn't speak to us, she was hallucinating and fearful, sleep became almost non-existant. There were days when she ran on less than 2 hours sleep.

This started an almost 3 year journey to figure out what was going on. During that period she lost nearly everything she loved. She couldn't go to school, she couldn't manage playdates or most outings, couldn't go to dance class. And trying to cope with her behavioral problems and constant meltdowns, we definitely lost parents of the year status. We dealt with many, many specialists, explored everything in the medical book. Finally, exhasperated, I started to do web searches. The only thing that she matched 100% (or even more than a couple symptoms worth) was sleep apnea. We had never even heard of it!

By the way, Melatonin has been a lifesaver for us as well!

We got a sleep study and discovered that she had a very severe case. They speculate that she likely had it at least mildly before the illness (she never was a great sleeper, possibly that's why?). But, after getting the throat infection her tonsils swelled and never went back down. Where most kids will stop breathing 2-3 times an hour with sleep apnea - she stopped breathing 18 times an hour!! We had her tonsils and adenoid removed. Her tonsils were the size of golfballs. We saw an immediate change after her surgery! It was like a miracle.

Unfortunately, we weren't (and aren't) quite done. From all she's been through, she now battles some pretty severe anxiety. It disappeared that summer after she had the surgery, but reappeared with a vengance when she started school that fall. She was in such a constant state of high anxiety that she would suffer adrenalin dumps from her brain that would trick her into thinking she was in danger and she would go into full panic attacks. Worse than anything we'd seen before. :( As soon as that started happening we put her on an anti-anxiety medicine and it has made a huge difference. But it's important to note that this is something that would not have helped until we corrected the medical problem.

She's now in 2nd grade. She is behind academically, emotionally and socially, but making great strides to catch up. We are so, so grateful!

To put this in a WDW context: Shortly after her initial illness, she was admitted to the hospital because they were worried she might have a secondary infection in the brain. She had to have an hours long EEG, a spinal tap and an MRI. We were trapped in the hospital for 3 days and we were only allowed to give her sips of water. I'm sure she thought we'd all lost our minds!

We'd had a WDW trip planned for months and would have cancelled it if that weren't all she talked about while in the hospital. She'd been there when she was two and loved everything! So, we went for it. It certainly wasn't our best Disney trip, because we were dealing with all these new fears. But, we had some very magical moments. When we first arrived, we got checked in and headed for the cafe for some lunch. As soon as we sat down a CM came over and asked her if she'd like to be Chef of the Day. She was given a decorated chef's hat, a Mickey waffle and a ton of different toppings. We saw her first smile since the whole ordeal started!

Anyway, I'll stop here. I could go on and on, but I promised a "short" version. :blush:

ElenitaB
02-22-2009, 03:48 PM
And trying to cope with her behavioral problems and constant meltdowns, we definitely lost parents of the year status.
You might think that your "parents of the year" medal is tarnished, but from the outside looking in, I think it's shining pretty brightly. :hug:

jusandnew
02-23-2009, 08:08 AM
Hi everyone,
I have 4 children who are all special needs one way or other. My oldset two we adopted them 12 years ago and the oldest has muscular dystropy (no signs except gets tired quickly when walking a lot)learning, add. The next chilld has fetal alochol syndrome.(learning other then that just smallest body size) and ADHD. The last two children we just adopted them . One has asperger's syndrome(autism spectrum).My daughter has some learning deficts and ADHD. My husband is ADD.

We had to learn a lot with our son with ASD. Any change or alot of noise he can go into a meltdown. We use the GAC . Without it we have major meltdowns with everyone. This year we are going to rent a stroller for my ASD son. We have not done it before , but we are going to try and see if this will help us with the crowds and over stimulation. He is 11 years old.

Going to Disney is a big job. Some days I just wonder is this all woth it. It is to see the kids enjoy it. We have to go to the room at lunch time , so everyone does not get over whelmed. One of my kids room is all STITCH. We have all the STITCH things.
Last August we had to hold our son down during a meltdown and some people throught we were hurting him. Once the meltdown was done he was ok. We went back to the room.
I thought I knew a lot because I work with special needs everyday until I have a child with ASD.

TheVBs
02-25-2009, 07:31 AM
You might think that your "parents of the year" medal is tarnished, but from the outside looking in, I think it's shining pretty brightly. :hug:

Thank you so much! :blush: I wish I felt that way. I know you can only do the best you can in these kinds of situations, but it's hard not to look back and kick yourself over the mistakes.

If I were to offer one important piece of advice for anyone going through these challenges, it would be to trust your instincts. Our DD had all kinds of behavioral problems as a result of this incredibly severe sleep deprivation and you wouldn't believe (well you probably would) all the things that got suggested. There were some doctors who just couldn't wrap their minds around the fact that this started with a medical problem and wanted to address it as if it had been a life-long problem, which would have made it a very different situation. There were times when it was very hard to stand our ground and be conservative with the onslaught hitting us. We took the time to research everything suggested ourselves. We got second and third opinions. And we were unbelievably fortunate to have people in our lives who told us what we needed to hear, not what we wanted to hear, and it helped us keep our bearings. Doctors are tools, not gods. Seeing different specialists and getting different opinions was like rummaging through the tool box until you found the tool that did the job. If a doctor ever suggests something that in your gut doesn't sound right, do your own research and seek out other consultations.

Another hard lesson we learned was to always be the gatekeeper of our child's sensitive information. Don't ever let a doctor, teacher, or any other person let you feel as if you have to hand over control to them or sign over consent for anything.

I only hope that someday I can tell DD's story and have it help someone else. So, I try to keep telling it!

wedoada
03-22-2009, 03:41 PM
Hello Folks,

I have posted about myself elsewhere on INTECOT but wanted to put a brief bio here for people to use if they have a need.

I am 44 and a lifelong person with a degenerative orthopedic disability. I grew up using canes and crutches and became a fulltime wheelchair user in 1985.

I have been an E911 Communications Officer for a local Police Department in NH for over 25 years. I have also been a conslutant on Accessibility and Disability Poicy issues since 1988.

When the Americans with Disabilities Act (ADA) passed in 1990 I was 1 of 150 people nationwide selected by the US Department of Justice and the Equal Employment Opportunity Commission to receive specific training as ADA Consultants. Since that training I have provided thousands of ADA Access Audits and Training Workshops accross the country. I testified before the US Senate in the early 90's on the ADA and Disability Policy.

I am now an adjunct professor with "Round Table Group", a Washington, DC think tank and am considered an Expert Witness by the courts on matters related to the ADA, Accessibility and Disability Policy.

I have been married for nearly 20 years and have two children. Both my children were born severely premature and while my son has been diagnosed as ADHD they are otherwise generally healthy.

If I can be of any assistance with ADA or Accessibility matters please just drop me a PM and I will try to help.

**One note I am a PERSON with a disability and a wheelchair user....I am NOT "wheelchair bound" or "confined" to a wheelchair". :cool:

frakers
03-22-2009, 04:47 PM
My younger son who is 2, is totally blind. (I've posted once before on this thread in case you're interested in more info on him). Anyway, he had his second cane training lesson last week at our local mall. The first lesson was at our church where people know him but that wasn't the case at the mall. I was amazed at how many people just stopped dead in their tracks to watch him! Admittedly, it is rather unusual to see such a small child who is; 1) blind and 2) ready for cane training, (he's quite bright--not bragging, folks just keep telling us that who work with him) but give me a break! I would think it's "normal" for someone to watch in passing but to completely stop what they are doing and just stand there to watch the little guy? Luckily we are not a sensitive lot, Lord help us if we were! I guess I knew this kind of thing would happen but this was just the first time that it actually DID.

Thanks for letting me vent a bit...:)

Renfairwedding
03-25-2009, 12:01 AM
Very cool thread....

My name is Bill and until last year i had very minor foot issues. Than last year my right foot decided to fall apart and demand to have multiple surgery's. It was then the doctors decided that I needed a foot the resembled a foot any Hobbit would be proud of. Do to my condition I have been very limited in any desistance walking and have had to rely on wheeled transportation.

Because of my ability to not being able walk stairs and go into scary basements and such I was forced to retire from the Plumbing & Heating company my Brother and I are were partners together. As not very many people bring their leaky toilets and sinks to the office for repairs

I was also very active as a Volunteer Fire Fighter and Emergency Medical Technician (over 25 years).

Walt Disney World was my goal this year to get back on my feet.. (well my butt) and out into the world. My wife and I spent a week in December and I have been rolling ever since. During the time of the surgery's I would read this board every day soaking up as much information I could get dreaming of our vacation.

I really enjoy all the comments and information that is presented on Inter cot and if any one has any questions about plumbing or how cool it is to have a hobbit foot please e-mail anytime.

Thanks to you all. :D

tinkerddeedee
04-19-2009, 09:13 AM
Well, reading through all your posts I wasn't sure I was "worthy" of sharing my little issues.
You are all amazing people and I applaude you all for getting up every day and facing life! You are all inspirations to me!
That being said, I felt compelled to share my little bit of history, I DO feel encouraged in your company!
First off, my olddest DD now is an amazing, athletic, funloving 14 year old cancer survivor. She was DX at the age of 19 mos. with stage 1 neuroblastoma. After a lot of surgeries on her tiny body and a mis-DX, she was able to have the tumor resected and has been cancer free ever since!!!!
I was DX 7 years ago with celiac disease. This is a gluten intolerance where I cannot, under ANY circumstances, eat anything with wheat, rye, barley or oats. It is a way of life that one has to adjust their eating habits. I sort of relate it to a food allergy, but it is much more severe.
Thankfully, DW has been the most accomodating location I have ever dealt with! So many restaurants/stores/food companies will hide behind a statement like "we have not tested for gluten therefore we cannot guarontee to be gluten free". The people at DW have went above and beyond the call of duty to make sure our stay will be a pleasant one! (my youngest DD is anaphylactic to cashews, pistachios, and mangos, and has a dairy allergy)
We will be staying at POR in May and we are all so excited. Our last trip was 6 years ago, off site so this is our first time on site!
Thank you for letting me share my experience with you and getting to know you all a little better!
:rocks: :grouphug: