So, who do we have on board?

[beksy]

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!

[Nana]

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]

Hello, Nana!

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

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

[Nana]

Yes, they do grow up fast. Good to be here.

[peemagg]

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]

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...

[pjbs35a]

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!

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]

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]

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]

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.

[TheVBs]

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.

[ElenitaB]

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.

[jusandnew]

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]

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.

Thank you so much! 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]

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".

[frakers]

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]

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.

[tinkerddeedee]

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!