Dollywood with physical needs

After going to Disney last spring, where they treated us so well, I have my standards set pretty high.  And, Dollywood met them!  The hardest part of the trip is that Dollywood is hilly by nature.  There are 1-2 hills where you really are pushing up or down, but for the most part, the terrain is pretty manageable.  We rented a wheelchair when we arrived for just $10.  They also have ones with motors for adults.  We then went to guest relations and got a pass to take us in the "Q-bot" line.  Their version of the fast pass line.  It was not a busy day when we attended, but the wheelchair does not fit through the turns of the regular lines, so it was Q-bot for us all day.  We never waited more than a few minutes for any ride.  The kid section was great and we spent a lot of time there.  We rode some of the other coasters, but held Griff off of a few of them since we are still working on his core strength.

Though it was freezing cold the day we went, we had a great day and I would return again in warmer weather.  There was lots of handicapp parking at the front of the park, but I can imagine that it might fill up on a busy day.  But, they have trams running in all the lots so you don't have to walk a long distance.

I would recommend Dollywood and found it very manageable with my son with CP.

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

Watch for a sweet message from Griff at the end.  Love this boy!  He just makes my heart smile.
~Martha

OK, video test here.  I uploaded a video of Griff at therapy yesterday so you can get an idea of what he does and how far he has come.  I'll try some more later if this one works.  We are at the end of an intensive therapy at Vanderbilt.  Griff has had therapy 3 days a week for 2 hours a session for 6 weeks.  Plus, he has has an hour of horseback therapy and starts swimming on Friday.  This intensive has been so awesome for him.  He is doing so well on his loft strands (walking sticks).  And, has taken several steps with no assistance in the past few weeks at therapy.  This is Ms. Laura in the video with him.  He gets so tickled that he falls at the end.  But, what is not in the video is that he pushes Ms. Laura over with the ball and just starts cracking up.  See the below picture.

In the above picture Griff walks to Ms. Laura with his hands and the she pulls the green band.  It snapped at the end.  Then Griff flies back.

Happy Weekend All!  More later.
Martha

A Photo Trip down MEMORY LANE

I've been super nostalgic lately.  Of course, the kids starting Kindergarten has really made me think about how far we have come in the past few year.  But also, a friend of mine had a little girl at 26 weeks and I have been reliving our NICU days with every one of her CaringBridge posts.  And, one of our favorite NICU doctors is retiring and I was looking through itty bitty baby pictures trying to find a photo of Dr. Rojas.

So, take a step down memory lane with me...

Griff at just a few days old.  1 lb, 14 oz, 16 inches long.

Gabby, 1 lb, 6 oz, 12 inches long.

Gracie, 1 lb, 8 oz, 12 inches long.

We've shown this one a lot, but it was our 1st family picture, March 27, 2007.  The kids were just 2 1/2 months old.  Seems like forever ago, but I remember this moment so vividly!

January 6, 2008.  Griff, Gabby and Gracie celebrate their 1st birthday!  It is Gabby, Griff and Gracie from left to right.

2nd Birthday, 2009.

Gabby on her 3rd birthday.  Love that face and smile!

Griff, some things never change :)

Sweet Gracie.

Their 4th birthday is Ms. Leah and Ms. Lindsey's class.

And finally...

Gracie strikes a post on the 1st day of school!

Gabby loves colorful clothes!

Perhaps his last 1st of school picture with his walker...!

I'll update soon with how well they are doing at school, Griff's walking stick progress, our new intensive therapy and the girl's dance class.  When we took the photos at the top of the page just after the kids were born, the start of kindergarten was the furthest thing from our minds.  I remember looking at the 3 pound baby in the incubator next to us and just dreaming of the day when our babies would be 3 pounds.  Now, Griff is pushing 50 pounds and is getting so tall! Gabby is about the same height and Gracie, well, she can fit into the tiniest spot and just cuddle.

Have a great one!
Martha