So, who do we have on board?

[Lori Anne]

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]

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]

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]

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]

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]

Wow, that is amazing, Dreaming_of_Disney247!

Bless you and your DS, too!

[disneybelle5]

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]

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!]

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]

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]

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!! 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]

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]

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]

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]

[EmISeeKayEeWhy]

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]

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]

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.

[J.C.&ALI'SMOM]

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]

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!!