3DisneyNUTS
<font color=green>can't think of anything witty!<b
- Joined
- Apr 5, 2004
- Messages
- 1,850
I am sure this was just this Team member but it started our trip on a negative note. Which BTW we got over quickly it just stinks that it had to happen. You all know Chris' med history but for the newbies he had a stroke in utero was born missing 2/3rds of his brain and know is developementally delayed, has speech issues and epilepsy. His prognosis was brutal but defied many many odds. He appears more typical than not until you really interact with him you can see his issues. He is 5 and a Disney nut like his parents 
As all you know Chris has uncontrolled epilepsy. We are on about a month of control during the day but he is having seizures in his sleep (new for him). The last vacation in Sept was really rough he had a ton of seizures about 7 a day. Disney gave us a pass to help us enjoy everything between the seizures. He had a blast even thorugh it all.
So we arrive for our first day at Universal at IOA and I went to the guest services to explain everything but in a needs term not a diagnosis way. The TM was so stuck on explaining things to me that he wasn't listening. I needed stroller as a wheelchair and explained the seizure issues. Now at this point I was not sure if Chris would have such a rough time like he did in Sept since the seizures are happening at night now but if he did I wanted to make sure we had a plan. So as I am explaining what happens with Chris the team member keeps bringing up the family centers at first aid. Those we don't need since we have a reclining stroller and Chris can sleep off the seizure in that. Moving him to a bed would upset him and make him think we were at a hospital. Sometimes the seizures make him sleep 2 hours also so having the option to just leave the park is sometimes better for us. That way we don't have to disrupt his sleep more than from the stroller to the car.
Anyway he wouldn't listen to me. Intsead of taking in all this information he was just spewing it back. Almost like he thought I was lying. Almost like he didn't want to hear it. Like I was asking for too much.
So of course because he wasn't listening I had to get technical. Now I HATE having to retell my sons birth story but I had no choice. He was so insistant that we use these family centers that we did not need. So here we go explaining it all to him. The whole enchilada. So the team member sees me upset now and says well we only give passes to autistic children you will have to rewait online if your son has a seizure. I then explained that that could mean we do nothing at all that day since my son has several a day.
Anyway I explained more to him through crying feeling my insides getting ripped out since I felt like he was making me beg. Although Chris is not autistic he has MANY similar behaviors but since it is stroke related it is not autism yet he has autistic children in the class and you cannot differentiate them from Chris and vice versa. But all because my main isuue is epilepsy it was like I needed to plead a case.
Anyway hopefully he understood because we were finally accomodated. I honestly don't think it was malice on the TM end just the lack of training. People are ignorant about disabilities and thankfully for the autistic population they have numbers so they have a voice. You say stroke in utero with developemental delay, speech delay and epilespsy and I might as well have spoken in greek. While my sons issues are basically identical (minus the seizures) with the autictic population.
So anyway I just wish that the TM would have listened to my sons needs rather than try to tell me what he he thought Chris needed.
Chris had a blast and the seizures were completely un noticeable. He did sleep alot in the stroller and his meds knocked him out for at least an hour to an hour and a half each day so I would definitely sufggest a 5 days pass so you don't have to rush.
We stopped at Target on the way there and rather than renting a special needs stroller (I forgot to set it up) we bought a costco geoby from target for $50. It was definitely too small for Chris BUT it held him he made himself comfortable in the recline and it was a lifesaver. The walk is a little long from the car to the park so that would have been killer with my 48 lb boy in my arms
Overall we loved Universal and they team members were great to Chris. Spiderman at the character breakfast was amnazing as was the cat in the hat!!!! We are definitely going back

As all you know Chris has uncontrolled epilepsy. We are on about a month of control during the day but he is having seizures in his sleep (new for him). The last vacation in Sept was really rough he had a ton of seizures about 7 a day. Disney gave us a pass to help us enjoy everything between the seizures. He had a blast even thorugh it all.
So we arrive for our first day at Universal at IOA and I went to the guest services to explain everything but in a needs term not a diagnosis way. The TM was so stuck on explaining things to me that he wasn't listening. I needed stroller as a wheelchair and explained the seizure issues. Now at this point I was not sure if Chris would have such a rough time like he did in Sept since the seizures are happening at night now but if he did I wanted to make sure we had a plan. So as I am explaining what happens with Chris the team member keeps bringing up the family centers at first aid. Those we don't need since we have a reclining stroller and Chris can sleep off the seizure in that. Moving him to a bed would upset him and make him think we were at a hospital. Sometimes the seizures make him sleep 2 hours also so having the option to just leave the park is sometimes better for us. That way we don't have to disrupt his sleep more than from the stroller to the car.
Anyway he wouldn't listen to me. Intsead of taking in all this information he was just spewing it back. Almost like he thought I was lying. Almost like he didn't want to hear it. Like I was asking for too much.
So of course because he wasn't listening I had to get technical. Now I HATE having to retell my sons birth story but I had no choice. He was so insistant that we use these family centers that we did not need. So here we go explaining it all to him. The whole enchilada. So the team member sees me upset now and says well we only give passes to autistic children you will have to rewait online if your son has a seizure. I then explained that that could mean we do nothing at all that day since my son has several a day.
Anyway I explained more to him through crying feeling my insides getting ripped out since I felt like he was making me beg. Although Chris is not autistic he has MANY similar behaviors but since it is stroke related it is not autism yet he has autistic children in the class and you cannot differentiate them from Chris and vice versa. But all because my main isuue is epilepsy it was like I needed to plead a case.
Anyway hopefully he understood because we were finally accomodated. I honestly don't think it was malice on the TM end just the lack of training. People are ignorant about disabilities and thankfully for the autistic population they have numbers so they have a voice. You say stroke in utero with developemental delay, speech delay and epilespsy and I might as well have spoken in greek. While my sons issues are basically identical (minus the seizures) with the autictic population.
So anyway I just wish that the TM would have listened to my sons needs rather than try to tell me what he he thought Chris needed.
Chris had a blast and the seizures were completely un noticeable. He did sleep alot in the stroller and his meds knocked him out for at least an hour to an hour and a half each day so I would definitely sufggest a 5 days pass so you don't have to rush.
We stopped at Target on the way there and rather than renting a special needs stroller (I forgot to set it up) we bought a costco geoby from target for $50. It was definitely too small for Chris BUT it held him he made himself comfortable in the recline and it was a lifesaver. The walk is a little long from the car to the park so that would have been killer with my 48 lb boy in my arms

Overall we loved Universal and they team members were great to Chris. Spiderman at the character breakfast was amnazing as was the cat in the hat!!!! We are definitely going back
