Just back: Autism and Epilepsy

[ladyjubilee]

We were in the parks 12/17 to 12/27. My son has autism (on the severe side), is non verbal, and has Epilepsy. He is mild CI and ADHD... and can be aggressive as well as being an overall stinkerpot.

We had a Pin code so had free dining, did MVMCP, had DAS and stroller as wheelchair.

We stayed at French Quarter, which was lovely. A nice quiet retreat after the parks, and small enough to have easy access to food and the shops when needed. We did encounter two issues. First, though the room was beautiful, as was the view, it wasn't very clean. The dust triggered my mom's asthma several times. Next time we will see if the room can be vacuumed and dusted before we check in.

Then, even though we let them know when we reserved, the sheets weren't changed..... even though they NEEDED to be changed. If night time potty training is an issue, be sure to really stress that they sheets have to be changed.

MVMCP was definitely worth it, though we should have spent more time on rides, not waiting for shows. But it is a very late night. We did keep to the med schedule, but being out so late and being so tired triggered a seizure the next day. The first in three months. Next time we know to start adjusting his schedule incrementally before the trip.

We discovered that the crowd mix during this season leans more international than the late spring time that we normally go. We definitely encountered different cultural attitudes toward children with CI and in a chair. More starring, and more dismissal of my son as a person. It extended to the point, my son (standing) was literally physically pushed 'out of the way' by an adult when a character approached my son. Some cultures are accepting, others just not so much. We pretty much decided we won't go back at this time of year.

DAS worked for us. I think we used it once in DHS and four times at MK. That said most of what we do isn't Fastpass. We were able to re ride People mover as there wasn't a line.

My son was able to do JTA. Being nonverbal wasn't an issue. Many of the other children did not speak English, so he wasn't the only one to need nonverbal cues. He was able to move between his throne and standing as he gained and lost comfort.

Since we had the dining plan, we ate at a variety of restaurants. Most were able to get French fries... the one food he will eat consistently. The transition into the low lighting of the table service restaurants mixed with hunger caused meltdowns. I think his visual field issues were also part of the problem. I think he couldn't see.

On that front, companion bathrooms... they aren't getting the attention they need. I'm not sure what folks are doing to those potties, but be sure to look before your child approaches... even with Lysol... I know my son couldn't see some of what was left on the potties due to low lighting. I think others with limited vision might have the same issue.

Hope some of that helps, I tried to think of things I hadn't read in other posts.

ETA: I didn't tell the GR CM why we needed DAS. I just said we needed DAS and wheelchair as stroller and before I could say more she said no problem. However, my son's needs are necessarily 'invisible'.

 

[Goddesstree]

What does CI stand for?

Sounds like you have a good idea of how to handle your son's needs at the parks - that takes a lot of planning and ingenuity! You should feel a good sense of accomplishment and pride for what you do. You also seem to understand how to let what other people think not get to you - that's important too!

I'm confused about the bed wetting issue - when my daughter wet the bed, we stripped it down so that it didn't soak the mattress/pad. Then we let the mousekeepers know we needed all new bedding, by way of a note on the stripped bed They took care of it quite nicely. Did your son wet the bed every night? How would they know when it was wet?

 

[jmkford4]

Thank you so much for this! My son is ASD severe, non-verbal, ADHD and SPD (fairly severe as well). We went once when he was a baby before he was diagnosed. We are planning a trip for September and I was worried about how he would react.

 

[SMD]

Have you thought about using something like a Good Nites bed pad on hotel beds?

 

[Kellykins1218]

Have you thought about using something like a Good Nites bed pad on hotel beds?

Love the Good Nites bed pads!

 

[ladyjubilee]

Have you thought about using something like a Good Nites bed pad on hotel beds?

We do.... but when he is really tired he travels in his sleep. It doesn't happen every night, in fact, it only happened once during the trip. We've never had an issue before which is why I was not prepared for it to be an issue. In most places the sheets get changed when needed.

 

[ladyjubilee]

What does CI stand for?

Cognitively impaired.