What exactly is PDD?

[laughinplace199]

Hi,

My DN5 was recently diagnosed with PDD. His parents either don't have a lot of info or aren't able to explain it well. I'm trying to get a better understanding of PDD. We are going to WDW this spring and they are too. We're not traveling together, but our trips will overlap. They've only been to WDW as a family once (and it was a disaster for DN), and we've been tons of times. If I can better understand what the little guy needs/doesn't need, I could help steer them in the right direction as far as rides/attractions/dining.

TIA!

 

[Ka' eo]

Pervasive Developmental Disorder. Generally it is a diagnosis given to children who do not meet the criteria of something on the autism spectrum. These kids have difficulty with social issues, sensory stuff, changes in routine, for example. Sometimes these kids appear a bit quirky, but not always. They may have poor eye contact, for example. A lot can be done especially with an early diagnosis. My son has been diagnosed with Asperger's, but I believe it is more PDD. He has had difficulties all his life, but is doing really well now. He is close to age 11. His friendship issues are still problematic, but we have been assured that he will make friends as he gets older. Adults adore him. Kids think he is odd. He would get overwhelmed at the parks, and sometimes get oppositional as a response to this. We had to be careful to get him out of the parks quickly if he was starting to show signs of nearing a meltdown. Some of the big rides, like EE and Splash haven't always been fun for him. It was a bit challenging and he did not show the joy other kids show, but he is now doing so much better and I think our trip in April will be a blast for him.

Go do a search. Overstimulation, loud noises and big crowds, as well as scheduling issues are predictable challenges for these kids at the parks, but because the range of symptoms is so broad, it can be different for each child.

I bet he is a really neat kiddo!

 

[laughinplace199]

Thank you! He definitely has social issues and he never makes eye contact. He has a twin sister who is very social, so this stands out.

I will do some searching to learn more. Perhaps when chatting with his parents before the trip, I can find ways to bring up things that may be an issue for him. They did not have a good time last year, and I really want this trip to be better for them.

 

[Ka' eo]

Thank you! He definitely has social issues and he never makes eye contact. He has a twin sister who is very social, so this stands out.

I will do some searching to learn more. Perhaps when chatting with his parents before the trip, I can find ways to bring up things that may be an issue for him. They did not have a good time last year, and I really want this trip to be better for them.

You are so welcome. It is fascinating that his twin does not have the same personality/makeup.

We found staying at the Contemporary or Poly was the best, as we could walk back quickly (or use the boat in the case of the Poly), if necessary, and the kids really did well on the monorail (so quiet, like a timewarp). Caution them against values and mods where they need to depend on buses or their own car. When the child needs to get out of the park, you need to get out fast. CR is the most economical, Poly is most our style, GF would be another option, but we don't like it there as well. For Eppie resorts, we liked the Beach Club, because of Stormalongbay and proximity to the park.

We also use Tom Sawyer Island ALOT. It is a virtual paradise in the middle of chaos at almost any time of day. We also do not do lines. Rope drop, FP and skipping rides if they are too long. Again, leave the park during the hottest and most crowded times. Be in tune and try not to do too much.

What an awesome Auntie you are to care so much about your sweet DN.

I have spent years grieving and accepting my kids have challenges. Life is harder for us, BUT I have come to terms with our situation and THAT has helped our trips go smoother. Going to Disney has been a positive experience for us and our kids have been 5 times (our 6th trip is coming up in April). If his parents plan for his needs, reduce their expectations, have a positive outlook, and be able to accept his challenges, this will help your nephew (and them) have the best time possible. For us, Disney has gotten easier as the kids have gotten older (they all have adhd in addition to my son's issues). Gosh, taking one little 5 year old with pdd would be a piece of cake for us!

 

[laughinplace199]

Thank you...again!

Your advice is very much appreciated. Unfortunately, their budget only allows for staying at All Stars. I think they are renting a car though, so at least they will be able to leave a park faster by rental car than they could by bus. DN might also enjoy riding the monorail if the parks are overwhelming for him.

They do know to arrive at rope drop and they know about FP, so that should help with avoiding long lines.

I love your advice about Tom Sawyer's Island. I never would have thought to go there (haven't been there in years). I can see how it would be a nice place to escape the chaos of the park, so I will definitely suggest it to his parents.

Thanks again.

 

[Ka' eo]

Thank you...again!

Your advice is very much appreciated. Unfortunately, their budget only allows for staying at All Stars. I think they are renting a car though, so at least they will be able to leave a park faster by rental car than they could by bus. DN might also enjoy riding the monorail if the parks are overwhelming for him.

They do know to arrive at rope drop and they know about FP, so that should help with avoiding long lines.

I love your advice about Tom Sawyer's Island. I never would have thought to go there (haven't been there in years). I can see how it would be a nice place to escape the chaos of the park, so I will definitely suggest it to his parents.

Thanks again.

I didn't mean to be presumptuous about a deluxe. We are 5 so have to stay in one or get 2 rooms somewhere, so we choose the deluxes for many reasons. The car would be much better than the bus, so I hope they definitely do this. And getting on the monorail to ride over to Epcot or vise versa is also a way to take some time. We almost always due Park Hoppers, so we can switch to another park if the one we start at is too crowded that day.

Enjoy your little nephew and niece.

 

[Ka' eo]

So I just learned your nephew and his family can get a GAC. I NEVER knew this existed! This will help them ALOT!. Go search and read about it.

 

[laughinplace199]

Oh, I didn't think you were being presumptuous (we're a family of 5 too, so I understand where you're coming from). A monorail resort would be the ideal, so the suggestion is appreciated.

Great advice about Park Hoppers, too! We always get Park Hoppers, so sometimes I forget that not everyone does that. I don't know what their plans are, so I will definitely suggest PH to them.

 

[laughinplace199]

So I just learned your nephew and his family can get a GAC. I NEVER knew this existed! This will help them ALOT!. Go search and read about it.

I have heard of GAC, but don't really know what it's all about. I will go do some research now. Thanks so much - you've been really helpful!

 

[clanmcculloch]

PDD IS on the autism spectrum of disorders. It is the broadest part of the spectrum with a huge range of possible issues.

Regarding the GAC: His parents need to understand and be able to explain exactly what his problems will be. Stating a diagnosis is pointless since each child on the spectrum may have different needs. Before entering their first park they will need to walk over the Guest Relations window and explain their son's issues as they relate to the parks and the CM will give them a GAC with the appropriate accomodations for his particular needs. The GAC will also identify the dates of their trip as well as how many are in their party. Note that the GAC is NOT a front of the line pass. She should take a look at the stickies on this board for more information about the GAC.

For many 5 year olds on the spectrum a valuable accomodation is something known as a stroller as wheelchair tag. This is a special tag that's put on their stroller by the CM at GR and allows the parents to bring the stroller anywhere that a wheelchair can go including all the way through the lines (not normally allowed). This provides the child with a place to separate and shelter himself from all of the surrounding activity. WDW really is a sensory overload even for many NT (Neuro Typical - a term meaning non autistic child) children so for kids with sensory issues this can help immensely.

What seems to make the biggest difference for my daughter (she has Asperger Syndrome which is at the very high functioning end of the autism spectrum) is try to try stick to her regular schedule as much as possible and to try to be in the least crowded, slowest spots. For our last trip, I subscribed to a service called TourGuide Mike which did exactly this for us. We hardly had to use our GAC at all and we kept very close to our usual at home schedule as far as eating, sleeping, resting, etc. We also even at Christmas time didn't ever experience crowds which shocked me. We were able to accomplish more on this trip and without meltdowns than we had ever been able to do in the past. TGM was far more valuable to us than the GAC, though we did still use the GAC. We ended up only spending a few hours per day in the parks, spent a few hours by the pool, spent some time resting in the room, went out for dinner and managed to avoid meltdowns which was TOTALLY unbelievable for us. I'll never go back without TGM. A good touring plan is worth it's weight in gold (actually a heck of a lot more than it's weight because it's just a thick piece of paper LOL).

 

[Ka' eo]

A good touring plan is worth it's weight in gold (actually a heck of a lot more than it's weight because it's just a thick piece of paper LOL).

Oooh, I forgot about this! We always have used a touring plan. Good point!

 

[mrsbert]

My DS8 is PDD-NOS. We also use Tour Guide Mike for our trips. It is the best money spent. We have never used GAC and I believe it is because of the planning I do beforehand and because of TGM. One of our trips, we went the week between Christmas and New Years and had no problems or meltdowns from DS8. Don't get me wrong, it was WAY crowded and I don't believe we will go again during that week.

Another thing I preach is breaks. We still take breaks mid-day even though I know we won't nap, the slower pace helps us out and maybe a little swimming.

Good luck and know that you have come to the right place for answers.

 

[bookwormde]

Autism genetics has lost of characteristics (and manifestations), an additional one is a different EF (executive function system) which makes linear processing more difficult (like verbal and written communication, memory and discrimination) but gives them amazing gift in non-linear processing (visual, non linear analysis etc). That is why virtually all the great inventors come from an autism genetics.

The whole classic Autism, PPD-nos, HFA, Aspergers separate diagnosis are going away in a few months (DSM-v) and it will just be Autism (and a description of where an individual falls on the spectrum).
Bookwormde

 

[laughinplace199]

Thanks for the replies, everyone. They are very helpful!

 

[ElizabethG]

My DS is PDD-NOS (the NOS tag usually accompanies PDD, it means "not otherwise specified"). The gals in my support group joke about that. For a lot of kids on the spectrum, anxiety can be a problem. It can build when you are at Disney because everything is unknown. We found places that calmed my son and revisited them. Tom Sawyer was huge for us as was its a small world. My son kept wanting to go on that. He would say, "I really like that song." Stay clear of scary/dark/4D rides, or at least work up to them. One of my friends has a son (7) who can go on any ride in WDW (he has Aspergers). It is all just "fake" to him. My son was so freaked out by 'Honey, I shrunk the audience' that it completely ruined that day. He no longer wants to go to Epcot because "Epcot is scary". Usually kids on the spectrum have a tough time keeping themselves regulated. It is difficult for them to calm down once they start to get anxious. It helps if they have some sort of sensory tool that will help them. It could be a quiet place, chewing gum, a stroller, a small toy, a stress ball, or doing something familiar, like going back to a ride they liked.

Be careful when you talk about the subject with your nephews parents. Getting the diagnosis is a huge shock to the system. It can take a while before you can say the word 'Autism', so don't use it until they do.

I can give you a technical description of PDD. It is a developmental disorder. A developmental delay is easier to under stand. That means you are developing normally, just at a slower rate. Perhaps a 6-year-old has the skills of a 4-year-old. A disorder is different. It means that the different skill areas are all over the board. Maybe the 6-year-old has the social skills of a 4-year-old, the reading skills of an 8-year-old, math skills normal for their age, etc.

 

[cantwaittoseemickey]

The one thing that helps us the most with our DS(10) who has PDD-NOS is to take headphones. We learned the hard way how different sounds affect him in especially Epcot. The fireworks and alot of those rides are quite loud for him or put him into sensory overload. So now we pack his headphones. They do not completely do away with the noises but they cut them down tremendously to where he can hear but at his level. We got them at our Wal Mart store in the hunting section.

 

[dawneg]

Just want to second all of the above. We just returned from a very crowded week with my 7-year-old with PDDNOS. The GAC saved our life. I preferred to get a dr's letter to hand to Guest Svcs on which I asked her to include that behavior/sensory problems make waiting in line difficult and that we'd like to use a stroller as a wheelchair. Also, TGM was indispensable for crowds (well, it was all crowded) and navigation.

Because of the control/anxiety issues (and a big fear of characters) I had to do a lot of reassurance to my son that we'd leave the parks right after lunch and that I'd protect him from any "mascots" as he calls them. I didn't push him to do any rides. Basically, our afternoons and evenings were pool/downtime.

The highlight of our week was the Jedi training in HS. Suddenly my fearful DS was ready to face Darth Vader. Just awesome!

 

[poohnpigletCA]

What a cool Auntie you are.

We just got back from a trip to DW with our 5 yo daughter who has a PDD diagnosis. As previously mentioned there can be sensory overload. We brought sunglasses for our dd and also ear plugs on a string. They are small and easy to carry and are very helpful for loud attractions. I would be happy to send you a few in the mail if you need them.

Her stroller from home was helpful it gave her a nice quite place. We also brought sensory chewy items for her. With our dd we find it extremely helpful for her to have a small item to carry in her hands. Sometimes we will let her pick a small stuffed animal at Disney.

We spent a long time pre-trip researching resorts. I know you mentioned budget constraints. I highly recommend POFQ it is a moderate but it is a very small relaxing resort. We did that with no rental car. The bus transportation worked great for us and with the size of the parking lots I think it might have been faster to get to the buses.

We also spent many hours on utube showing her rides. It was helpful for her to be familiar with what she might see.

Like many have mentioned we also used Tour Guide Mikes and found that very helpful. We had park hoppers and would usually go back for down time in the afternoon.

Have a wonderful trip.

 

[makelifehappen]

A bit late, but I thought I would chime in anyway.

There are 5 Pervasive Developmental Disorders:

Childhood Disintegrative Disorder (CDD)
Rett's Disorder (RD)
Autistic Disorder (AD)
Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS)
Asperger's Syndrome (AS)

There are still alot of Dr's out there that do not understand the range of the PDD spectrum and will often give a diagnosis of any number of the above mentioned.

PDD-NOS is when the individuals do not meet all of the requirements of the strict criteria for autistic disorder.

PDD is actually the correct diagnosis for anyone that falls within the spectrum (any one of the 5 Disorders) and because it is often difficult to detect some of the "symptoms" of children under a certain age (usually into their 2nd or 3rd school year) they don't get a more specific diagnosis until then. It is true of some adults as well~if they have lived life without a diagnosis and adapted to the world around them/receiving accommodations or modified daily living, it is also difficult to give a more specific diagnosis than the broad range PDD covers.

If interested in reading more~here is a link:

Understanding Autism Spectrum Disorders

As for accommodations or things to consider, it really is all individual.

I have 2 children that have 2 completely different set of needs, but are on the same spectrum.

One is sensory seeking, the other is sensory defensive. One has high anxiety, the other fears NOTHING. One has MAJOR motor control problems, the other has absolutely no fine or gross motor issues.One (3 years old) likes fast paced, rollercoasters/rides and the other (nearly 12) needs to be coerced into just about EVERYTHING and boycotts rides.

Both have no love for loud, unexpected noises and often cover their ears with the vacuum, trains, fireworks, etc. and are EXTREMELY "picky" eaters with oral motor issues.

We do not take alot of breaks at Disney because it happens to be the biggest "special interest" (another PDD trait) in our home. They'd both be happy to go from morning until midnight, but we know (and have met up) with other Disney addicts (on this thread) who quite like/need their scheduled breaks in the day.

Our youngest is "a runner". She fears nothing, has little understanding of boundaries and has no sense of danger. This is a huge safety concern for us. The last couple of times we have been we explained the need for the stroller and requested a "wheelchair" sticker because of our safety concerns (another lovely tip I learned from our fellow DISer ).

TBH, the GAC has more than tripled our experiences at Disney and is probably one of the biggest reasons Disney *wins* each and every time.

Difficult to find such amazing service and the accommodations come without the stigma. We never feel out of place or like we are inconveniencing anyone because of our needs. In fact, we always feel like we are VERY well taken care of.

Hope this helps.

MLH

 

[CaraMiaBelle]

Thank you...again!

Your advice is very much appreciated. Unfortunately, their budget only allows for staying at All Stars. I think they are renting a car though, so at least they will be able to leave a park faster by rental car than they could by bus. DN might also enjoy riding the monorail if the parks are overwhelming for him.

They do know to arrive at rope drop and they know about FP, so that should help with avoiding long lines.

I love your advice about Tom Sawyer's Island. I never would have thought to go there (haven't been there in years). I can see how it would be a nice place to escape the chaos of the park, so I will definitely suggest it to his parents.

Thanks again.

My oldest son, who is 7, has Pdd-Nos. It sounds like your nephew could definitely benefit from calming surroundings like my son. This will be his first Disney trip and I made that a priority. If they end up being able to get a deal, I HIGHLY recommend they look into Port Orleans. And actually a family of 5, it actually ends up being cheaper than the value resorts. not sure how many of you will be in a room. I stayed there once (before my son was born) and it is amazing how quiet and relaxing it was. I just know any child with PdD would love it. I am just picturing my son watching the water wheel now. (watching spinning things is a common ASD favorite pastime) The boat ride to Downtown Disney is nice and relaxing too, compared to the buses anyway. : )
I would love to stay at AoA because I know my younger 2 would love it, I'm just afraid of the crowds and sensory input there.
Tom Sawyer Island was first on my list of calm down places too when I started mine. : ) there arent too many places in MK that are. I plan on utilizing the train and monorail as well.
And I know Animal Kingdom is not the most favorite park to most, but I think we will be spending a lot of time there....it is definitely more his speed. Make sure your nephew gets some down-time at the boneyard sandbox area there!
Hope u have a great trip!