Raising Eli & Zachary + a little Princess

On June 22nd my family left for our first vacation. Our destination was DisneyWorld and we had some advice given to us that really came through and I thought I would share with the masses (just in case you didn’t know).

The first thing you should know is that Disney supports Autism. They have a special needs pass that you can get at any guest relations desk at any of the theme parks that will allow you to SKIP THE LINES. Now, this of course can be abused by people so we had brought a note from Eli’s doctor showing his diagnoses and how standing on 60-75 minute lines would drive him (and us) crazy. I have to admit I was completely against getting this pass because I thought Eli could handle it, but I was wrong and this pass proved to be invaluable.

At almost every ride Disney has three lines: Regular, Fast Pass and an alternative entrance. If the line was long we simply showed our pass and our entire party was either put in the fast track line or moved to the alternative entrance. We waited literally at the longest 20 minutes to get on any ride. This was amazing. There were no meltdowns, no whining and no panic attacks. Eli simply enjoyed the day.

If you have a special needs child, Disney will help you survive the park and lines. All you have to do is ask for the help. As for the trip so far, we are on day 6 of 9 and Eli has been a roller coaster junkie. Nothing phases him, and it has been amazing. He has done all of the big rides and spent a day at Typhoon Lagoon. It is funny because at one point in his life he had such an aversion to being splashed or getting wet and now I couldn’t get him out of the wave pool and slides.

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PDD-NOS means pervasive development disorder – Not Otherwise Specified. In other words, they know your child is not developing at a normal speed but they don’t know how to classify the disorder yet. For those parents out there, like myself who has a kid that was diagnosed with PDD-NOS that is not necessarily a diagnosis that will carry forward with your child forever. The bottom line is that some of these Autism spectrum disorders can’t be classified at the 2, 3, 4 or even five years old. Aspergers is usually not diagnosed until they are 7 or 8.

So it is important to keep working with the doctors, behaviorists etc and work towards understanding the true nature of the development disorder. I was in a fog thinking that PDD-NOS was it, but the reality of the situation is PDD-NOS means they just don’t know yet. Keep that in mind!

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Eli has been re-classified and diagnosed with Aspergers Syndrome. This is both terrifying and expected but a new chapter in Eli’s life. To be honest, I really have no experience with the disease so now it is time to educate myself. The same questions and more come to my mind, the same fears and despair enter my mind. Eli is wonderful, and I wouldn’t want him any other way but yesterday at the field trip he took (in which I chaperoned) was an eye opening experience. The teachers FAIL to communicate the true nature of the amount of time Eli spends self soothing himself by stimming. I also watched him socially interact with some kids and although most of it was appropriate there were times when was unsure of himself.

All of this is very depressing and today will start my re-invention of being a parent to a special needs child. I need to learn the in and outs of this disorder and understand how I can better help Eli adjust. The main question now is do I tell Eli that he is an Aspergers kid? When do I tell him? and how?

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