Disney World with the kiddos!

We just got back from our first family trip to Disney World in March, 2013.

Disney so takes care of their guests with special needs.  We rented a stroller, a bit pricy, but worth it.  Next time I hope to bring our own wheelchair.  We got a pass to put on the stroller and could wheel it up to each ride since he has a hard time walking independently and with steps.  Up to 6 people can go on a ride with that pass.

Griff, 6, could ride all of the rides, though we opted to not try Space Mountain as he needs to gain some core strength.

We went to both Magic Kingdom and Hollywood Studios.  Both were fun and Griff got to be just a regular kid.  He also got some extra attention from some of the characters and one of the workers got Goofy to dance with him.  It was so sweet and fun.

We stayed onsite and rode the buses all around.  The buses had ramps so he could walk right on with his walker.

I know the policy has changed some since we were there in the spring.  A friend of mine just went and I am going to try to get some details from her to share.

The Bus

       Well, many of you know our ongoing struggle to get the kids on the bus together.  Basically, they can all ride the regular bus, but only Griff was able to ride the bus for the kids with special needs.  At this time, he can not ride the regular bus because if he were to fall out of the seat, no one could help him back up.  On the other bus there is a driver and an aide.  There is absolutely no way Griff would get on one bus while his sisters rode another.  So began my quest to get all three on the same bus, the bus with kids for special needs (which I thought would be a simple request.)  Ummm, wrong.  So, 6 weeks later, a few rounds of faxed paperwork, showing up at the Board of Education, communication with several people in several departments, and countless emails - APPROVED!
       If you know me, I don't give up.  I fight for a cause I believe in.  One thing that I have learned being the parent of a special needs child is that some things are just harder.  I thought it would be easy to get them all on the same bus.  I mean, point A and point B are the same.  What seems common sense to me, sometimes requires paperwork, permission and just not settling for no.  While I got so frustrated during the process, I stayed nice and persisted.  So, fellow parents, whether your kids has special needs or not, fight for what you believe is right.  When you see that short bus, think about my kids and all the special kids that ride the bus.  Think how lucky they are and how a simple bus ride really does take a load off these parents.  And, give an extra little thought to the kids that have to get on the bus at 6:45 in the morning to get to school that starts at 8:00.  We opted out of the morning ride because of the early pick up.  But, some parents have no choice.  My eyes open more and more every day.
     And, the best part...pictures!

~Martha

Intensive Therapy - Round 2

And, we're off, finishing up the end of our second week of intensive therapy at Vanderbilt.  Schedule coordination gets a little crazy, but it is so worth it to see all of Griff's strength grains.

Therapy is work-play.  He is organizing he cars, but the whole time standing up and down.  He is a little OCD on some of the order things, so the organization and arrangement takes a bit longer so each car can be in a perfect like :)

One thing, that you didn't see much of in the last round of posts, is Griff walking with his sticks/crutches.  He actually practices with just 1 crutch some.  See below.  This was the first I had seen him walk like this.  I actually ran out of hall space.

You know, we don't know what the future is for Griff.  Will he walk independently, will he need sticks or a walker, or will there be a need for a wheelchair?  Quite possibly, there will be a time and place for each.  But, what I have heard from the teachers, therapists and administrators at Gower, is how strong he has gotten.  Many have seen him begin there at age 4 on his walker.  Now, he just uses the walker at the end of the day if he gets tired.  He's getting there.  He is stubborn and somewhat independent. 

And, lastly, Griff had a little accident while at school using his sticks.  A classmate got his foot tangled with one of the sticks while Griff was walking and Griff fell face first.  Both top teeth (still baby teeth) ended up coming out, one immediately, the other the next day.  He's got a cute lisp going.

We welcome Spring Break!  The kids are off for 2 full weeks.
Martha