My Son's MAW Trip

[GavandGraciesMommy]

Thought I would take the time to show off my handsome wish kid

I am hoping this works... And this is my daughter

 

[Threeboysandachickie]

Sounds lie our sons are quite a like. Luke also doesn't speak and is considered on spectrum. Our dates revolve around central october until early November. Maybe we Will be there at the same time! Anything to avoid Iowa winter! God bless and happy planning

 

[GavandGraciesMommy]

I thought I would drop in and give an update on how things have been going with Gavin. Gavin has been doing great medically. He saw his doctor recently for a blood pressure check and everything seems to be looking okay. He will be having an unrealted dental surgery in December but the doctor thinks it should not cause any issues with his heart. Unfortunately Gavin has been having a lot of difficulty emotionally and behaviorally. I think I have mentioned it in our posts but Gavin has mental retardation and severe autism. The doctors have had to switch some of his medications and up others due to some increased behavior (spitting, kicking, and screaming). He has been having trouble managing things that never bothered him before. We know that this is not uncommon with autism but many of these are abnormal for Gavin. To say the least it has been has been very difficult on the rest of us as well. I guess I might be writing this to help me cope with some of this. It is so hard to listen to him scream. Lately it has been for an hour or more at a time. This includes tears at times. If it is not crying, he is angry. Since they have upped the one medication the episodes due seem to be further and further apart. We just keep praying that he will be our happy sweet little boy again and not have to go through these episodes for a while.
Back to his Disney plans... that does seem to be the only thing that Gavin consistently laughs at. Whenever we mentioned Lightning McQueen he will giggle (even in between screams at times haha). His sister is just as excited. We made a paper chain to countdown the days. I have been keeping myself busy with little projects to prepare us. I think it has been my coping skill during this time

 

[GavandGraciesMommy]

 

[Threeboysandachickie]

I am sorry you have been having behavior problems. What meds is he on? We have issues with spitting and hyperactivity with our ds. He is on risperdal and guanfacine. I hope you get your sweet happy ds back soon! I know med changes can be very difficult. Hugs to your family!

 

[GavandGraciesMommy]

I am sorry you have been having behavior problems. What meds is he on? We have issues with spitting and hyperactivity with our ds. He is on risperdal and guanfacine. I hope you get your sweet happy ds back soon! I know med changes can be very difficult. Hugs to your family!

They just started him on the guafacine about 6 months ago. That is the one that they increased and seems to be helping. He also takes Prozac and Trazadone. We have a lot of issues with sleep and have to be careful what meds he goes on because a lot of them can affect the heart. Tenex lowers blood pressure and he is already on blood pressure meds so they might have to switch it eventually but for now he is okay. It sounds like you can relate quite a bit. I would never wish this on any child (or family) but it is nice sometimes to know you are not alone.

 

[justgeorgi]

My son, Gavin, has had a rather rough last year medically. On top of that, Gavin has autism and mental retardation so cognitively about 16 months- 2 years old. It was very hard for him to understand what was going on. He had open heart surgery in November and I swear seeing him strapped to that bed was the hardest thing ever. So to make a long story short... we received notification that Gavin is being granted a wish. Although he is primarily nonverbal (about 10 words) when I asked him what he wished all he kept saying was "Lightning McQueen" and "fish. This was a pretty exciting for us because Gavin normally doesnt open and answer questions. It really shows how excited he is So we met with our volunteers last week and they were so awesome and nice. Gavin has wished to go meet Lightning McQueen for his birthday (October 15th). We are waiting for approval now but they were pretty hopeful (but as everyone know they cant make guarantees). I will keep everyone posted

Sure hope the trip goes well! Gavin is going to have a fabulous time!

 

[jjmomof4]

Sounds lie our sons are quite a like. Luke also doesn't speak and is considered on spectrum. Our dates revolve around central october until early November. Maybe we Will be there at the same time! Anything to avoid Iowa winter! God bless and happy planning

All three of our boys have high functioning autism, and while they are verbal, there are still a lot of pragmatic speech delays. Not knowing what to expect at the parks or on a ride led to much frustration at Disneyland this summer for that wish trio, so in preparation for Colin's upcoming WDW trip at the end of this month, he and I have been watching all of the video clips on the Disney site and Harry Potter and Discovery Cove. Also there are tons of videos on YouTube that have helped as well! Colin was so upset and frustrated after his brothers trip, he asked to cancel his, but after a week of watching videos he's finally starting to understand and get excited!

Hope you both have wonderful trips!

 

[GavandGraciesMommy]

Yes we are going to start watching videos as it gets closer. Sometimes if you tell him too much before hand he will perseverate on it. Gavin is pretty severe on the spectrum but I feel like we are making some progress. My biggest worry is the plane ride. We have taken Gavin to the Mall of America and he handled that really well. As long as he has his stroller to retreat to he normally does okay. Our MAW chapter was awesome and rented him one just like his one at home to use at the parks The plane worries me because Gavin is never quiet and really hates to be inclosed. They are giving us a sedative for last resort but obviously we do not want to do that if we do not have to.

 

[GavandGraciesMommy]

Hello everyone Today is 39 days until our trip. With a lot of help from Marne we have come up with the following schedule... Please tell us what you think and any suggestions you may have We are super excited and want to make it as perfect as we can

Sunday: Travel Day, Arrive around 1:00 and do the orientation and just check out GKTW. If we arent too tired I would like to take the kids to Downtown Disney to the toy story where they can make their own potato head. Our daughter is obsessed with them and I am sure my son will find something

Monday:THis is Gavin's birthday day so we plan to start the day at Hollywood Studios to meet Lightning McQueen. We have a reservation at 50's Prime Time Cafe. We then plan to go to Epcot and take a rest in the Wish Room and then finish our day out there.

Tuesday: Magic Kingdom all day and Mickey's Not So Scary Halloween Party that night. Take a rest in the wish room there as well.

Wednesday: Animal Kingdom and lunch at Tusker House. We plan to head to Magic Kingdom again that night to catch the fireworks.

Thursday: Univeral Studios. Christmas party at GKTW that night.

Friday: Sea World and then spend the rest of the day at GKTW and attend the Tea Party and Princess and Pirate Party

We plan to do all of the character meetings in the morning and do breakfast before heading to the parks. We would like to take the kids to a beach somewhere but you know we are cramming a lot in a short amount of time. I want to make sure they have time to take naps at the wish rooms on the days we are at parks all day. Please any suggestions are highly welcomed. Criticism as well

 

[GavandGraciesMommy]

I am scatterbrained about 90% of the time. My thank you needs to go to Maroo for help with the spreadsheet

 

[Lilfoot93]

It is getting so close! You guys must be so excited! The itenary sounds good to me, but then again we haven't even started planning!

Jackie

 

[l_mccafferty]

Just a note on the Nemo Ride, the queue is pretty dark and I found that the voices on the ride are quite loud. I'm just back and there was a little boy in the queue before me with big headphones and a torch on and he was not happy walking through the queue, he also didn't like the travelator that you use to get into the clammobile. Just a heads up.

Hope you all have the time of your lives!

 

[aym4Him]

Just a note on the Nemo Ride, the queue is pretty dark and I found that the voices on the ride are quite loud. I'm just back and there was a little boy in the queue before me with big headphones and a torch on and he was not happy walking through the queue, he also didn't like the travelator that you use to get into the clammobile. Just a heads up.

Hope you all have the time of your lives!

Good to know! Our 3.5 yr old DS isn't fond of loud noises. We have some headphones that we will need to remember to include with our WDW supplies! We got them for him when our hospital treated us to Monster Jam. SOOO loud! Once he got over the initial shock, he proudly wore his headphones and had a great time!

Thank you, again, for the heads up!

 

[GavandGraciesMommy]

Thank you so much for this info. Gavin does not like things on his head but he will let me but my hands over them with washcloths so may try something like that. Thanks again

 

[Threeboysandachickie]

I asked about the 5point cares harness that attach to the airlines today to the maw chapter. They are going to look into renting them for our families, I hope these work as well as advertised!

 

[aym4Him]

I asked about the 5point cares harness that attach to the airlines today to the maw chapter. They are going to look I to look into renting them for our families, u I hoe these work well as advertised!

I've read about those on the carseat.org forums. Great reviews there!

 

[GavandGraciesMommy]

Oh my gosh I completely forgot to call back. When I called the airline it was labor day and they were closed. I will have to talk to our wish chapter as well or try the airline again

 

[Threeboysandachickie]

They are over $100 to buy so I really hope they can provide one!

 

[GavandGraciesMommy]

Kind of freaking out. The trip is so close and I dont know whether I am more excited or nervous...eehhh