Song of My Heart

Okay, this may sound strange, but I was in the car the other day and listening to mp3's.  (That by itself is not really strange).  I have a love of big orchestral scores and in particular soundtracks.  I was listening to Steve Jablonsky's "Arrival to Earth" from the first Transformers movie.  What was strange was that I realized in a way it reflected my feelings about our family's autism journey.

The music starts off low and quiet and a bit dark.  Like something is creeping up on you and you're not quite sure what is going on.  With Firstborn things crept up on us.  We knew he had some sensitivities, but being first-time parents, we didn't realize they were red flags.  We didn't know enough to start early interventions.  We knew Whirlwind had a short fuse and seemed a bit behind his peers emotionally, but we had no answers. 

The strings begin repeating their theme a bit frenetically.  We start learning about Firstborn's diagnosis and putting all the pieces in place.  It was a massive learning curve and really intimidating.  We hid his diagnosis from many people--including him for a long time.  Whirlwind and Lawboy were diagnosed with ADHD and we were trying to figure out the best ways to help them.   We finally find something that works for impulse control only to find that Whirlwind, and later Lawboy, are also on the spectrum and it was hidden by his ADHD.  Acroboy shows signs of being on the spectrum and we finally get evaluations and answers.

The strings change into the main theme and the main work begins.  We are working in earnest on social stories, conversations, food therapies, counseling, support groups and we no longer hide.

The music builds and voices join in.  We find we have many people on our team, though we are not opposition free.

The music continues to swell and rise.  I have hope my children, despite their disabilities, will thrive and succeed.  I have seen so much growth in them.  I am so blessed they do as well as they do.  I recently met my friend's sister, who has a 17 year-old non-verbal son.  I am lucky and I know it.

The music goes quiet with voices singing in a Gregorian-like harmony--a moment of stillness and reflection.  Then come the drums--almost like a warcall.  I will fight for my kids.  I will keep fighting battles and equipping them the best I can to fight their own as well.

The music swells and presses forward.  We will press forward and we will not give up.  Autism may be in my family, but it is not all that my family is.  My kids, my husband and my faith are my greatest blessings from God.  They each have the potential to great things in their own way and I will do everything in my power to help them achieve their goals. 

UPDATED: Review of DAS at Walt Disney World

It's November 2015, and a few changes have been made to the DAS system.  As most people know, Disney World has been moving over to a system using Magic Bands.  At the time I wrote this in November 2013, there were still FastPass kiosks where paper FastPasses were handed out.  Now a large portion what you do in the parks (from tickets, to dining, to paying for merchandise, room keys, and FastPass+ admission) is done with Magic Bands.  (I'm not going to post a how to on Magic Bands at this time).  Now even the DAS is controlled via Magic Band.  I'll explain how this works. The old post is in black.  Outdated information has been crossed out in PURPLE, new information has been added in RED. 

We just made our most Knowing we were heading to Disney, I have to admit I was very nervous when I heard about changes being made to the Guest Assistance Card.  I understand why they felt compelled to make said changes (I'm sad that so many people ruined a great thing for my kids who don't get many breaks), but understanding why did little to relieve the anxiety I had for how this would affect my kids.

I confess I made more than a few phone calls to Disney to get as much information as possible about the new DAS system which replaced the old GAC on October 9, 2013. The cast members were courteous and as helpful as they could be though I couldn't get definitive answers about how they would handle my unusual situation with four children being on the spectrum and there being a total of eight of us . I was directed to pretty comprehensive information on their website.   I'm posting links, but in case you can't get to them I'll tell you how to navigate there.  Go to DisneyWorld.com.  In the right hand corner you'll see a HELP drop down menu.  While holding down your left mouse button, select the "Guests with Disabilities." This will bring up a new page.  On the disability page, select, "Guests with Cognitive Disabilities."  There are helpful suggestions there regarding stroller rentals, rider switch, and break areas.  There is a pdf guide you can download with information specific to each park.  There is also a link to a page dedicated to the Disability Access Service card. 

How it works:

You go to Guest Relations in any park and talk to a cast member.  Your whole party must be with you.  Based upon your needs, you will be issued a DAS on your Magic Band.  They will take a picture of the child who needs the DAS, They will then scan his/her band as the primary DAS party.  Each person in the party will then have his/her Magic Band scanned as well and attached to the DAS.  We had no issues with all eight of us being attached to one band.    

issue it for the number of people in your party and you will sign the back saying you understand the rules and will not abuse it.  It's good for up to 14 days depending on your tickets.  (Multi-day tickets are valid up to 14 days after the first day is used, so this makes sense). 

You can see our Photoshopped DAS to the right.