HEY guys!!! Any advice for a long lost disboarder New vacation coming

[4DisneyNUTS]

Hey everyone. I know I fell of the face of the earth and I used to be 3disneynuts back in the day but then the 4th came and changed that.

Chris my DSwD (darling son with a disability) is almost 12!!! Puberty has hit and with that new challenges and thankfully old ones are less.

Just to intro us since it has been so long since I posted regularly...Chris is developmentally delayed from having strokes while I was pregnant with him (we didnt know this was happening till he was born). He has brain damage from that and has global delays, Speech imapired, cognitively and fine motor issues. He also has intractable epilepsy. He does however have age appropriate gross motor skills. Also since the last time I regularly posted he has been showing a lot of overlap with Autism traits so he now has that in his diagnosis. He definitely present more and more autistic as he gets older.

Here is an update. He is now so much bigger in the past two months than he has ever been. He was always tall but now he is TALL. He has now started to tower over adults not just other kids. So of course you know that brings more challenges especially when people are intimidated or expect more of him than he is capable of.

We have good news as well. When I actively posted here previously he was having at least 3/4 seizures a week up to 6/7 a day! We have switched up doctors and now go to Epilepsy clinic in NYC and his team there has gotten him to 1 to 2 seizures per year!!!!!

We have not been vacationing as much as we did in the past because gone are the good ole days of $50 flights to MCO and with a second child, prices, the economy, me leaving part time work because of the baby yada yada I had to back away from disboards for a while for fear of Disney Depression LOL.

Ok sorry this is soooo long. I was wondering if there is anything new in the world of Disney and disabilities that are desperate for me to know now, tips on how I should travel with a 5'4' inch almost 12 year old with the cognitive level ranging sporadically from 2-9 years old and along with DH 43 and me 41 and DS 4 who is typically developing. Has there been anything earth shattering that has happened or great in the past 4 years or so that I need to know. I used to feel like a DISexpert now I feel like a bgeninner again.

Oh yeah we own DVC and have maybe been at Disney 2 times in the last 5 years with our last trip being May 2011 and we went with extended family and it was a mini disaster, not total but definitely issues.

Next trip planned Sept 30 to oct 6th staying at SSR but waitlisting for BLT

Thanks in advance,

 

[Escape2Disney]

I don't have any info for you, but wanted to say HI! I was reading your story and it is so much like what my DDwD went through! She had strokes and seizures in utero, and spent a few years having seizures. She has many learning challenges, and was diagnosed as being on the spectrum late - age 13.

I just thought I'd pass on that DD is now in college! Sure, she has challenges and it takes her longer than her peers to grasp certain concepts, but she's doing it with a 3.4 GPA.

I know when DD was that young, I would have wanted to know that kids like her can achieve much more than the doctors predicted.

I'm glad to hear his seizures are under control and you're heading back to the Magic Kingdom!

 

[4DisneyNUTS]

Thanks for your awesome daughter!!!! I loved hearing this!!!!