Sensory Integration Dysfunction

[tinkerbelletreasure]

My 12 y/o stepdaughter was diagnosed with this last year. It is Autistic spectrum, but very mild. My 2 y/o son is delayed and recieving OT and they are going on the general assumption that he has it as well. He's been evaluated for Autism and Asperger's because his is causing more delays than hers did. He had some indicators for each, but not enough to diagnose him as such. I have read about the Guest assistance card on here and was planning on getting one because he will not do very well in lines if he can not be in his stroller, and he doesn't like strangers invading his personal space. My question is...when I was reading through the FAQ on here it mentioned that you don't have to have a doctors note and that most CM's wouldn't understand it anyway. I was also reading up on it on Allears.net and they mentioned several times on there about bringing a doctor note. I am not sure what to do about the conflicting information. We've just started the process less than 6 months ago and he hasn't been "formally diagnosed", but is recieving therapy. So I don't have a doctor's note to being, but could provide some of the progress reports from his theapist , not that they really say much other than what we are working on this week and any improvements over last week. Do I need to worry about bringing them, just to prove that he does indeed have a disability?

 

[KPeveler]

You do not need to bring a dr's note - they generally will not look at it.

They cannot make you "prove" a disability. They won't even ask for a dx - I don't have one, and I got a GAC to meet my needs.

All you need to do it have the child there with you (they won't issue a GAC for a person who is out of sight), and explain his needs. A diagnosis won't help -
"autism" has so many manifestations. What you do need to say is what he needs - stroller as wheelchair, so you can take it into queues and restaurants, etc

Just speak up and the CMs are very helpful!

 

[jodifla]

My 12 y/o stepdaughter was diagnosed with this last year. It is Autistic spectrum, but very mild. My 2 y/o son is delayed and recieving OT and they are going on the general assumption that he has it as well. He's been evaluated for Autism and Asperger's because his is causing more delays than hers did. He had some indicators for each, but not enough to diagnose him as such. I have read about the Guest assistance card on here and was planning on getting one because he will not do very well in lines if he can not be in his stroller, and he doesn't like strangers invading his personal space. My question is...when I was reading through the FAQ on here it mentioned that you don't have to have a doctors note and that most CM's wouldn't understand it anyway. I was also reading up on it on Allears.net and they mentioned several times on there about bringing a doctor note. I am not sure what to do about the conflicting information. We've just started the process less than 6 months ago and he hasn't been "formally diagnosed", but is recieving therapy. So I don't have a doctor's note to being, but could provide some of the progress reports from his theapist , not that they really say much other than what we are working on this week and any improvements over last week. Do I need to worry about bringing them, just to prove that he does indeed have a disability?

Actually, this is not on the autism spectrum, although some clinicians like to through almost every condition out there on the "spectrum.'

Take a look at "Autistic-like: Graham's story." It's a documentary a father made on his son who has SPD, orginally MISdiagnosed as ASD.

 

[bookwormde]

Sensory diffentials are considered part of the autism genetic set, but it does not mean that any of the other characteristics are present. Every child is unique and needs to be evaluated and suported with this in mind.

It is best just to discribe his limitation and needs to the CM who is handling the GACs and they are usually preatty good a applying the appropriate accomidations on the card.

bookwormde

 

[gamomof2]

SID is not an autistic feature. Nor are patients diagnosed with it. I'm surprised it was not diagnosed till 12. Seems kindof late for true neuro SID.

 

[bookwormde]

Sensory differentials and associated SID are one of the 3 primary characteristics of Autism genetics (along on with Social skills/TOM and EF differentials). All compitent clinicians know to review all 3 when evaluating for Autism genetics. Without one of the other 2 (particularly the social component) it certainly does not qualify for an autism diagnosis

bookwormde

 

[KPeveler]

I am 25 and just now being diagnosed with SID... so 12 seems early to me! I was misdiagnosed as a kid as having severe ADHD of an unusual type, but none of the treatments or meds worked for me... now we know why!

 

[jujiot]

Tinkerbelltreasure. I am not familiar with Disney's protocol with accomodations, but from reading these posts, it seems they do a great job. I just wanted to let you know that as an OT, I would be more than willing to write a summary of your child's needs if you are unable to get a doctor's note and think most OTs would be more than happy to do so. As a therapist, our notes may not be geared toward others not informed about this type of disorder and if he or she knew that in advance could write a great note justifying why your child will need accomodations.

 

[vaughan100]

We have a son who is on the autistic spectrum with ADHD, & sensory issues. We have used a GAC for the past 4 trips. Never have they asked to see a Dr evaluation. We have brought a copy of the Psychologist's report just in case their policy changes. Usually we describe the problems with jumping around, bumping into people, getting agitated in crowds noise etc... Then we ask to be able to wait in quieter places to cut down on the possible triggers for his issues. They then issue the pass that has the dates of our stay and the number in our party. Then they caution you that there will still be a wait. We get our GAC pass at the MK guest services and have never had any issues.

 

[SueM in MN]

As was already mentioned, it is not legal according to the ADA to ask for any proof of a disability.
If a doctor's note makes YOU feel more comfortable asking for accommodations, you can bring one with you. Just be prepared that the CMs will probably not want to see it. They are not medically trained and most of the letters from doctors are not particularly helpful - just listed a diagnosis, not things that would helpful to non-medical people.
The Passporter Book (Open Mounse), written by the operators of allearsnet.com do make the point that having a doctor's note is not mandatory. They feel it helps to smooth the process, but my experience on this board since 1999, is that I have only seen a handful of people post that they had a letter and the CMs wanted to see it. Most of the posts about letters have said the writer was surprised that the CMs would not look at their letter at all.

I have also had WDW Guest Relations CMs read over the GAC information in post #6 of the disABILITIES FAQs thread from time to time and they have always said it is accurate.

So, bottom line, if it is easy to get a letter from your child's doctor and you would feel more comfortable having one, get one. But, you won't need it and can't be forced to provide one.
Just be prepared to explain the needs.

 

[KPeveler]

As was already mentioned, it is not legal according to the ADA to ask for any proof of a disability.
If a doctor's note makes YOU feel more comfortable asking for accommodations, you can bring one with you. Just be prepared that the CMs will probably not want to see it. They are not medically trained and most of the letters from doctors are not particularly helpful - just listed a diagnosis, not things that would helpful to non-medical people.
The Passporter Book (Open Mounse), written by the operators of allearsnet.com do make the point that having a doctor's note is not mandatory. They feel it helps to smooth the process, but my experience on this board since 1999, is that I have only seen a handful of people post that they had a letter and the CMs wanted to see it. Most of the posts about letters have said the writer was surprised that the CMs would not look at their letter at all.

I have also had WDW Guest Relations CMs read over the GAC information in post #6 of the disABILITIES FAQs thread from time to time and they have always said it is accurate.

So, bottom line, if it is easy to get a letter from your child's doctor and you would feel more comfortable having one, get one. But, you won't need it and can't be forced to provide one.
Just be prepared to explain the needs.

I wrote my own letter (not a drs note at all) in which i clearly stated my needs and concerns. I have trouble verbalizing my needs, so I found that writing it down helped. It let me be clear, without my having to come up with something on the spot.

 

[bookwormde]

Kpeveler,

That is a great idea even if you just use it as notes, I know as a parent it is not always possible to explain clearly, partucularly if you are trying to keep one eye on the kids.

bookwormde

 

[deerhart]

Sensory differentials and associated SID are one of the 3 primary characteristics of Autism genetics (along on with Social skills/TOM and EF differentials). All compitent clinicians know to review all 3 when evaluating for Autism genetics. Without one of the other 2 (particularly the social component) it certainly does not qualify for an autism diagnosis

bookwormde

The third component can be EITHER sensory derived or obsessive derived according the DSM IV. This is usually either self stimulating behavior, limited interest, OR nonfunctional routines.

Many children with sensory issues are NOT autistic and many autistic children do not have sensory issues

 

[bookwormde]

Obsessiveness is a maladaptive "manefestation" of anxiety and is not a genetic characteristic. Being derived from the Autism genetic set and be clinically Autistic are two different distinctions.

Actually only a relatively small percentage of individuals who are in the Autism spectrum do no thave any sensory issues, but in many cases they are not major.

bookwormde

 

[clanmcculloch]

The biggest thing is to be able to explain the actual issues that you expect to encounter. You know that your son will function much better in his stroller in order to create a buffer between him and everybody else and that you'll need to keep him in it so explain that. If this will take care of his needs then that's all that you'll need to explain. If he may have other issues then you'll need to explain that as well (you don't say; will using his stroller as a wheelchair be enough?). You also don't say what kind of issues you foresee due to your DSD's SID but be prepared to explain that as well.

If they both need some kind of accomodation then I suggest that you request a separate GAC for each. This way, if only one of them wants to go on a ride or you choose to split up, they will both have their GAC and consequently their accomodations. The GAC is written for the person with the hidden disability so it can only be used if that person is actually going on the ride.

Don't worry about whether or not your son has a formal diagnosis of anything. The CMs at Guest Relations don't care about the diagnosis; they care about the specific need of the individual. If you've met one person on the spectrum then you've met one person on the spectrum. No two are the same and therefore their needs could be completely different. For example, with your DSD with SID (like others have said, it's not on the spectrum but it makes a great example), some with SID are sensory seekers while others are sensory avoiders and on top of that, most don't seek or avoid sensory inputs from all senses. My 12 year old who is on the spectrum does have plenty of sensory issues but for each sense she has different issues. She is an auditory sensory avoider, a visual sensory seeker, a touch sensory seeker who is also a touch sensory avoider (boy is that one a lot of fun) and an oral sensory avoider of very specific textures only (thank goodness: no feeding issues). It's very complicated. A diagnosis does NOT help the CM at GR and may actually result in the CM making some incorrect assumptions about your child's needs. Only explaining the problem/issue will get you the correct GAC.

 

[tinkerbelletreasure]

All of the debate about this actually makes a lot of sense to me. My stepdaughters limitations are a whoel different animal than her brothers. She was incorrectly assumed to have ADHD as a younger child. She was passed around from doctor to doctor on title 19 insurance so we still question whether we have an accurate diagnosis for her. My husband and I only got custody of her in January, so up until this point we have not been able to be very involved in her medical history because her mother lived over an hour away. But I would be willing to say I don't think she is on the Autistic spetrum. She has some sever tactile sensory issues, and some social awkwarness, but but her brothers is much more pronounced.
He is only 2.5 so we've only just begun the process of trying to get him some help and figure out his needs. He is most likely on teh autistic spectrum. he's been evaluated for Autism and Asperger's and could not be difinitely diagnosed with either although they could difinitly say he wasn't either.
I'm learnign so much everyday....Just since I originally posted this, my husband and I found out about another diagnosis, that more closely fits his behavior. I can't remember what it is called off the top of my head right now. Correct me if I am wrong, but if we are understandign this right, SID is just a collection of symptoms and not necessarily a diagnosis?
the symptoms seems so broad it encompasses both of our children even though their needs are so very different. My Stepdaughter doesn't even need any accomadations for Disney.
I think what I am going to do it sit down with his therapist next week and ask her opinion of what accomadations I need to ask for beyond using his stroller in lines. He's generally really good, but this is going to be such a disruption to his routine, I'm not sure what to expect.

 

[tinkerbelletreasure]

I just found the name of the other disgnosis. It is PDD. He is barely talking at 2.5, has issues with eye contact, loud noises, bandaids or stickers. he also really into repetitious behaviors and has a habit of flinging himself down for full body jolts. (hence why we think Disney will be great for him)

 

[clanmcculloch]

PDD (Pervasive Development Disorder) is another part of the autism spectrum, just like Asperger Syndrome is part of the spectrum. PDD is the broadest category. Asperger Syndrome is a very high functioning form. PDD can range from being similar to Asperger Syndrome but also includes speech delays all the way to quite severe. Within a single more narrow diagnosis it's amazing just how different every child is. My daughter with Asperger Syndrome has 2 very good friends who also have this same diagnosis yet to see the 3 of them, you'd never know it. They are all so very, very different and yet they all have the same diagnosis.

Something that's REALLY made a huge difference for us with DD12 at WDW is maintaining her schedule at WDW. Our girls always get up early on their own so we go to the parks early. We eat quick breakfasts at home so at WDW we eat similar foods in our room while we're getting ready. We eat dinner at home around 4:30 so our ADRs at WDW are always made for between 4:00 and 5:00 (this also helps with wait times to be seated for ADRs since this is a slower time and during busier times you're more likely to have to wait to be seated). At home they're in bed at 8:00 so at WDW we tend to skip night time activities and get them to bed at this time.

We've also learned the hard way to not stay too long in the parks. This most recent trip we subscribed to TourGuide Mike to help us really plan our touring properly. We managed to do quite a bit without crowds in only a few hours each day (well before meltdowns could hit) and this was over Christmas. This subscription was the best $20 I spent on that trip. After a few hours at a park, our daughter needs a break or else a meltdown will happen. TGM really made this not only possible but easy while not missing any of our family's must-do activities (we did pass on some things that weren't of as much interest to us but planning ahead makes it very easy to pick and choose which things to do and which to skip). We were out of the parks by 11:30 every day, grabbed lunch at the resort, had a bit of quiet time in the room, swam, then went for dinner. Swimming mid day was such a huge sensory tool for DD12 because she is a tactile sensory seeker but swimming seems to dampen many other sensory inputs. For her, you can actually see her stress/anxiety melt away in the water. At home we'll stick her in a shower when she's stressing, at WDW her daily swim does wonders.

 

[deerhart]

She has some sever tactile sensory issues,

My oldest son goes absolutely WILD when he comes into contact with leather. Which didn't bode well at his psychiatrists office with a leather coach. He would slide, spin, turn every which way just to have the feel of it all over him. He does the same thing with a leather like coat I have (will just rub his hands all over it and his face when he touches it).

It is pretty much the last of his major sensory issues we have dealt with. None of it was severe enough to warrant a SID diagnosis.

 

[a1tinkfans]

OP: I pm'd you!