Anyone else with a child who has PDD?

[OneMoreTry]

Pervasive Developmental Disability?

Our DD has this along with myoclonic epilepsy due to a metabolic encephalopathy.

Because this condition is so encompassing and rare and behavior is completely unpredictable and can vary from day to day or even minute to minute depending on how many seizures she is having from almost normal to requiring physical restraint, it is very difficult to express our "needs" to Guest Services. I have found some of them seem jaded (or exhausted) and I have gotten the glassy stare more than once.

Any stories of experience or suggestions are greatly appreciated.

DD usually has 5 to 20 seizures a day that can't be controlled (believe me she has seen specialists everywhere and we are taking her to a major center in Memphis next month). Some are minor and no problem and she doesn't even become unconscious. Others can make her completely disconnected.

When you first see her you might think she is autistic. She has some of the same habits and stims, she will withdraw and be unable to sit still. She can also also have some pretty dramatic drop seizures that can make her very disoriented and unable to stand up for a while.

Some days, for large periods of time she may act fairly normal and well-behaved. But at other times , when her encephalopathy acts up and she is having the abnormal brain waves, she might not be able to comprehend what we are saying very well and be very hyperactive and poke and pull at people around her, grabbing their belongings and food.

She might wait calmly for thirty minutes in line or she might decompensate and require physical restraint with trying to sit still for 3 or 4. It helps if she can sit on the floor and play with duplos or her trucks or baby dolls.

Going to the parks has always been difficult with her. But we do because she loves the rides and the activity and she can understand a lot of what is happening when she is doing well. Plus she has 4 sibs that love the parks to (not to mention dad).

We compensate by going to parks only 2 or 3 days out of a week, getting to parks early (which is difficult for her), catching shorter wait times, using FP, bringing a wheelchair in case she has a seizure and can't walk for a while, and leaving the parks 12 - 1 pm, etc. Many times we are there early enough to NOT use the GAC for most rides. (When she is doing well she likes to push US in the chair.) But we are still very limited in what we can do because it is very hard to wait in line with her -- Splash Mtn will make you wait in the hot line regardless of what a card says. Sometimes a separate waiting area works out. But many times that can be unbearable with her.

Honestly, the only reason we even made it to noon on previous trips and were able to see maybe 4 or 5 attractions is the fact that some CMs do give us shorter wait times. And THAT I was very grateful for.

I try to be grateful for what they provide, because Disney is better than many places. Dollywood was pretty good too.

 

[bookwormde]

For MS at guest services it is most helpful to focus on the actual “needs”, as the formal medical information is not something that MS is trained in, MS is not supposed to ask about and in many cased does not really give them the information they need.

Really explaining what practical impact her medical condition has at WDW and some examples of accommodation that you have used to lessen the impact might be helpful.

As for the “Autism” thing, most likely what you are seeing is the maladaptive manifestations of anxiety (not surprising with the unpredictability of her situation). These anxiety manifestations are secondary indicators for Austism and are the most obvious but also some of the least reliable since they are not derived directly from the genetic autism neurovariation. You may be able to find some useful ideas, therapies and information in the HFA/Aspergers literature for managing this anxiety (since this is a major challenge also for individuals on the upper end of the Autism spectrum).

One thing we have found at WDW is that monitoring and limiting how tired our child gets really helps with the anxiety, since anxiety is cumulative looking over some of the methodologies that other posters in previous threads use for managing it for Autism/HFA/Aserpgers may be helpful.


bookwormde

 

[OneMoreTry]

For MS at guest services it is most helpful to focus on the actual “needs”, as the formal medical information is not something that MS is trained in, MS is not supposed to ask about and in many cased does not really give them the information they need.

Really explaining what practical impact her medical condition has at WDW and some examples of accommodation that you have used to lessen the impact might be helpful.

As for the “Autism” thing, most likely what you are seeing is the maladaptive manifestations of anxiety (not surprising with the unpredictability of her situation). These anxiety manifestations are secondary indicators for Austism and are the most obvious but also some of the least reliable since they are not derived directly from the genetic autism neurovariation. You may be able to find some useful ideas, therapies and information in the HFA/Aspergers literature for managing this anxiety (since this is a major challenge also for individuals on the upper end of the Autism spectrum).

One thing we have found at WDW is that monitoring and limiting how tired our child gets really helps with the anxiety, since anxiety is cumulative looking over some of the methodologies that other posters in previous threads use for managing it for Autism/HFA/Aserpgers may be helpful.


bookwormde

Our child definitely does not have autism or Asperger's, even though she does chill by stimming at times -- just like I do with TV, which is my stim. But when she is connected to a 24 hour EEG you can clearly see that the times of significant withdrawal are associated with subclinical seizure spikes, which do not respond to techniques used for autistic kids. She is basically having almost constant seizures which meds don't help and behavioral therapy does nothing for either.

This is very difficult for people to understand, because on the outside she acts like Aspergers sometimes, but treating it as such is fruitless. Believe me I've been to all those sites up and down, back and forth.

She has been to many experts who all agree on the fact she is not autistic. I even asked if she could get an additional diagnosis of Autism because our state provides a lot of financial assitance for families of autistics that they don't provide for PDD or other disabilities.

There are times when she is obviously not autistic, and she can be that way for hours or days. She loves people and gives all our visitors hugs and shows them all her toys. She has great eye contact and tries to make friends with everyone around her. She communicates well during those periods and loves WDW just like a normal kid.

 

[bookwormde]

No I did not think she had autistic genetics by your description, just that some of the things that are done for anxiety for HFA and Aspergers might be helpful. It is funny that given enough anxiety almost everyone stims in some form.

Actually anyone who really “gets it “ with autism would know that she was not on the spectrum, since they only use the manifestations as a possible indicator and look for base genetic characteristics to make a determination, which your child does not have by your description of her.

bookwormde

 

[toodycat]

PDD is on the autism spectrum. This is why she may seem to have autistic characteristics. The PDD classification can mean a potpourri of autistic type behaviors, but it doesn't mean the entire classic autism checklist. There is some correlation between epilepsy and autism. (The epilepsy foundation has a great article on the subject on their website. It's called, Autism and Epilepsy: Cause, Consequence, Comorbidity or Coincidence? Interestingly, my son has PDD and I have epilepsy.) Because PDD varies so much, the types of challenges my PDD child encounters at WDW might not much resemble the types of difficulties another child has. For example, one of my son's characteristics is an intense sensitivity to loud noises. This knocks about a half dozen otherwise mild attractions off our list when we go to WDW. On the flip side, waiting in line is no trouble to him. I don't even bother with a GAC. Other PDD kids might tend towards eloping; mine doesn't. But, he likes a predictable schedule, so if I say we're going on the Buzz Lightyear attraction, we better go! It sounds like your approach to the parks doesn't ask too much of your daughter and you are already well-prepared for any issues she might experience. The only thing I can think of that might help you get more cooperation from Disney would be to get a doctor to write a letter spelling out specific accommodations that would benefit her. (From your post, it sounds like most of the help she would require is epilepsy related rather than PDD related,so you would probably be better off having her neurologist write the letter rather than her developmental pediatrician, say.) Another thread mentioned that when people are tired, they can go nap in the first aid station which has a nice private bed area. This might be something she would need post-seizure. Good luck. I admire your continuing to give her the opportunity to experience WDW in her comfort zone.