Disney: A great trip away from reality.

Our Disney trip was fantastic!  The first 3 days at the Wilderness Lodge was a mix of pool time and park time.  For this trip we didn’t rent a car so we used Disney transportation exclusively and even this aspect went smoother than expected.  I am not much of a “bus” person but Evan did great.  The parks weren’t real crowded but busier than previous October trips.  Cast members said there was a large amount of people from Indiana due to the extended fall breaks from the new school schedules.

The replacement system for the Guest Assistance Card, the DAS (Disabled Assistance System) worked quite well we thought.  Basically it is a revision of the GAC in which we get a return time for the attractions instead of having to wait in the long line, as this would not really work with Evan.  He can usually tolerate a wait of less than 20 minutes if he can stay in his stroller, a little less without the stroller.  The new system requires a bit more thought to maximize our time without causing adverse effects on Evan.   We talked with quite a few other groups with special needs and they also thought the system was a good change; if change needed to be done.

We followed those 3 days with a 7 day cruise on the Disney Fantasy.  Awesome ship and a truly fantastic cruise!  The ship is obviously very kid-friendly but the staff went above and beyond for Evan.  Our server even had food Evan would eat sent to their private island Castaway Cay.  We cruised with 10 other special need families through the Autism on the Seas organization.   That is us on the Fantasy’s center staircase.  The therapists were incredible and helped make the trip a very memorable vacation.  Evan even went in and swam in the ocean.  Never happened before!  If that wasn’t enough, the therapists also provided some much needed respite time and they even had a special meeting with Mickey Mouse for our group.  Everything was incredible!

The end of the vacation was back at Disney and a continuation of the fun and excitement of the first 10 days.  A great trip, unfortunately all good things have to come to an end.  This was no different-

Now it is back to the real world which includes work, therapy, trips to the gym and continued struggles with the future and what it may bring.  We are appealing an insurance decision so we are very concerned on what the future may bring.  Glad I don’t have autism as the anxiety would be way too much to handle.  Wish us luck!  We may need it!

Awareness is the Key!

 

By: Jim Monroe

Awareness is Key- part 3

What a day today was!  Pretty standard day— get up, get Evan ready for “school”, take him to school and go to the gym afterwards and saw one of our neighbors we haven’t seen outside due to the heat!  (Very good Spin class by the way!)  Rest of the morning and afternoon was pretty normal and uneventful.  Then it got interesting. Some good, some expected but another day.

Evan started his new therapy today to increase the number of food items that he will eat. He basically now has a very limited “self-approved” list of foods.  We can try as we might to get him to branch out but with no success.  He was to eat part of piece of bread (he has never had bread before) in order to get an edible reward.  Unfortunately he was not interested at all.  Try as they might the therapist was unable to get him to put it in his mouth.  This was not a big surprise but would have been nice.  They will continue the therapy daily though until success and mastering is complete.  Who knows maybe he’ll eat a sandwich someday.  Will update as needed-

We are also starting a sunglass/hat therapy so he will wear either one occasionally.  Evan not only won’t wear them, he also has gone up to people wearing hats and try to take them off of them.  While we are at the Y swimming, sitting around the pool with a hat on can be risky.  He even threw his friend Miles’ hat in the reservoir while on a boat ride.  Time will tell I guess.  This therapy went better as he would wear the glasses for a short time.  Baby steps!

Success has occurred on many levels with his therapy so expect these to be equally successful.  Evan now doesn’t throw himself down; he is able to wait for his choices; and even better he is potty-trained.  The latter success was almost 2 weeks of an intensive process but it worked the first time.  The therapists even came to our home for the first few days to integrate the process at home.  We couldn’t be happier with the therapy.

On a side note, I was also asked to be on the Board at Answers for Autism— Obviously I accepted.  My wife and I are also doing some videos at his school for us to make others aware of the center.  We couldn’t be happier to do it.  I look forward to being able to help out as much as I can, wherever I can.

I also completed the Color Me Rad 5K in Fort Wayne over the weekend.  The 5K was fine but I do not like to be that dirty with paint and cornstarch but it was for Special Olympics.  Our team, set up by my sister-in-law was named Evan’s Avengers.  I can’t thank all the participants enough.  The picture is from the run.

One week from Thursday (September 5) is the inaugural issue of Autism Companion with Evan on the cover—it will probably be a collectible.  Well maybe not but it will be in our house.

Awareness is the key!

 

By: Jim Monroe