Spectrum parents coping with cancellations?

[Erikarate]

Hi All-

Haven't posted in awhile...my poor DD13 has been looking forward to our April trip. Obviously this isn't happening nor would we want it to considering the circumstances (to say the least!).

I'm not looking necessarily for solutions here...just expressing my sadness. This virus has upended ALL of our lives, and for some in tragic ways. I think it is especially difficult for our ASD kiddos to process. She has been a superstar with the online learning, even though she misses her school.

She has been fighting a cold for a few days and so my DH and I are waiting to tell her until Saturday when hopefully she is stronger and doesn't have to deal with school work etc. But she KNOWS something is up...she is a smarty...

I know it's going to be tough Saturday. Wish me luck!

 

[Welsh_Dragon]

Good luck. It must be particularly difficult when you can’t give her an alternative date with certainty.

And, for what it is worth, I don’t feel that anyone should feel ‘guilty’ about feeling or expressing sadness. Feeling sad about a postponed holiday, doesn’t diminish the seriousness of covid or suggest that people care any less about it’s impact.

I hope that Saturday isn’t too difficult for you.

 

[Erikarate]

Good luck. It must be particularly difficult when you can’t give her an alternative date with certainty.

And, for what it is worth, I don’t feel that anyone should feel ‘guilty’ about feeling or expressing sadness. Feeling sad about a postponed holiday, doesn’t diminish the seriousness of covid or suggest that people care any less about it’s impact.

I hope that Saturday isn’t too difficult for you.

Thank you Welsh_dragon

 

[DLgal]

Right there with you. I have 2 ASD teen boys and have had to tell them in the last 2 weeks that:

Dad doesn't get to come home from Japan for spring break after all (due to travel restrictions on military members)

We won't be doing the Disneyland easter egg hunt this year (MAJOR BUMMER for my younger son)

School won't resume until May 4, MAYBE.

Grandma isn't visiting in May like she planned

All my 8th grader's end of school field trips and graduation are likely cancelled

We won't be going to Great Wolf Lodge over spring break (I had told them we could get day passes one day)

It has really just been one thing after another and it is SO hard. My 14 year old keeps repeating "What happened to 2020?"

So, I sympathize with you. However, my kids have been handling most of it better than I expected. I decided early on to be straight with them and commiserate about the fact that I just don't know how this all will play out and that no one knows right now. I share with them how I am feeling nervous and scared too, but that I am doing everything I can to keep us safe and healthy and they don't need to worry about things like food. I am emphasizing the things we still CAN do (bike rides, walks, playing games, watching movies, arts and crafts) and assuring them that things will get back to normal eventually.

 

[DLgal]

Oh, and I have bought them Legos and nintendo switch games and basically not said no to anything they want right now. Younger son got a fancy new road bike for his birthday last week. Helps keep them happy.

 

[Erikarate]

Thanks for sharing your story DLgal. We will get through this!!

 

[bookwormde]

What cancellation? you are just rescheduling for a better time

You can be pretty sure she has already figured it out

 

[fla4fun]

What cancellation? you are just rescheduling for a better time

You can be pretty sure she has already figured it out

The OP didn’t mention rescheduling, and it may not be possible to do so in a way that would soften the blow of the news that April is a no go.

OP, I hope she takes it better than you think she will, and that you are eventually able to get back to WDW.

 

[lanejudy]

Earlier this month it seemed every single day brought yet another cancellation for DD. I think 9 things all in the span of a week - all spring plans just suddenly dropped off the calendar. She was upset at the first one or two, but then just more disappointment. More has followed but I think she’s become numb to it all. School here has already canceled for the rest of the year. We still technically have plans for April vacation but I’m sure that will go as well. I’m trying to figure out how to salvage something fun for Easter.

As @DLgal said, we’re focusing on what we can do - bike riding and walks together, shooting hoops, planning a garden to plant in a couple of weeks, making music and enjoying some fee concerts on Facebook, sending ”sunshine” notes to Grammy and other seniors who are shut in alone. I tell her I’m sad and disappointed and frustrated, too; telling her it’s ok to have those feelings, and any others (scared and worried come up every few days). I try to plan at least a couple of favorite meals each week. And spending time together.

Sorry your vacation is impacted. Good luck with breaking that news.

 

[bookwormde]

As parents we can not help but worry, but each of these challenges just make our kids stronger, better self advocates and more independent.

I know it is easier looking back, but some of my best memories are watching them grow despite adversities

hang in there, our kids teach us a lot, especially what it really important in life

 

[DisneyOma]

My niece is having a hard time - so many important things for her, things that make her feel safe, less anxious, are not going to happen. She lives with her family in another country, and we had to cancel our trip for her confirmation (which is on hold until ?) that she was looking forward to so much. Plus, she gets so many therapies at school and school is still closed (but may open in a few weeks for them.) Her dad works out at sea, so he's gone for weeks and they aren't sure if he can get back every time he goes out. Luckily, he got back this time. I'm worried all the social progress she has made is going to be hard to maintain.

 

[Maggie'sMom]

We had a trip planned to DL for later this month, combined with a Princess cruise out of LA. DD, who is on the spectrum, was really upset when I made the final decision to cancel back in February. I tried to ease her into it by talking about the virus and how it "might" mean we'd have to cancel for a couple weeks before I pulled the plug. She vacillated between acknowledging she knew it wasn't safe to travel and being angry that we weren't going. It actually helped when Disney shut down because now it wasn't just me saying we weren't going. Now it was Disney saying it wasn't safe for the parks to be open. For a few weeks, she was pestering me regularly about when could we reschedule for. But once schools closed and my work switched to full-time work from home, she finally understood what I meant by "we will reschedule, but I can't tell you when." So for us, it was a gradual acclimation to the new reality.

We have a DCL cruise planned for September. Initially, DD was assuming that would happen with no issues, and I'd held off saying there was a possibility we wouldn't be going just because she's dealt with so much already. So she shocked me the other day when she said, out of the blue, that she knew our September plans would likely be cancelled too.

On the bright side, she's used this time to download the Blender software, which is a free, open-source 3D imaging software that can be used to create computer animation, and is teaching herself how to use it. She ultimately wants to create her own animated film-adaptation of Pride and Prejudice, her current favorite book. It's kept her busy and made it easier to stay at home all the time.

 

[Erikarate]

Earlier this month it seemed every single day brought yet another cancellation for DD. I think 9 things all in the span of a week - all spring plans just suddenly dropped off the calendar. She was upset at the first one or two, but then just more disappointment. More has followed but I think she’s become numb to it all. School here has already canceled for the rest of the year. We still technically have plans for April vacation but I’m sure that will go as well. I’m trying to figure out how to salvage something fun for Easter.

As @DLgal said, we’re focusing on what we can do - bike riding and walks together, shooting hoops, planning a garden to plant in a couple of weeks, making music and enjoying some fee concerts on Facebook, sending ”sunshine” notes to Grammy and other seniors who are shut in alone. I tell her I’m sad and disappointed and frustrated, too; telling her it’s ok to have those feelings, and any others (scared and worried come up every few days). I try to plan at least a couple of favorite meals each week. And spending time together.

Sorry your vacation is impacted. Good luck with breaking that news.

Thank you...I'm so proud of her. She has been a trooper. This is a big one, but she is feeling better from her cold now and we will get her through it. Saturday is the day. It gives her the weekend to process. Plus we are getting take out from her favorite restaurant, lol.

 

[Erikarate]

We had a trip planned to DL for later this month, combined with a Princess cruise out of LA. DD, who is on the spectrum, was really upset when I made the final decision to cancel back in February. I tried to ease her into it by talking about the virus and how it "might" mean we'd have to cancel for a couple weeks before I pulled the plug. She vacillated between acknowledging she knew it wasn't safe to travel and being angry that we weren't going. It actually helped when Disney shut down because now it wasn't just me saying we weren't going. Now it was Disney saying it wasn't safe for the parks to be open. For a few weeks, she was pestering me regularly about when could we reschedule for. But once schools closed and my work switched to full-time work from home, she finally understood what I meant by "we will reschedule, but I can't tell you when." So for us, it was a gradual acclimation to the new reality.

We have a DCL cruise planned for September. Initially, DD was assuming that would happen with no issues, and I'd held off saying there was a possibility we wouldn't be going just because she's dealt with so much already. So she shocked me the other day when she said, out of the blue, that she knew our September plans would likely be cancelled too.

On the bright side, she's used this time to download the Blender software, which is a free, open-source 3D imaging software that can be used to create computer animation, and is teaching herself how to use it. She ultimately wants to create her own animated film-adaptation of Pride and Prejudice, her current favorite book. It's kept her busy and made it easier to stay at home all the time.

Wow, your DD sounds creative and smart! We have been looking at pictures of "empty" Disney. It also helps her to see no one in restaurants around here and no traffic etc. She "gets it" that these are highly unusual times. And yes it helps that it is not me but Disney that is making the decision to be closed etc. It's really not a "choice", (though wouldn't go anyway as I said...).

 

[tinkerbelletreasure]

I usually don’t talk firm Disney plans with my spectrum son until right before we go, so that if we have cancel dining, or Fastpass plans, he isn’t upset. We have a Disneyland trip scheduled for October that he knows about only because we are supposed to be taking my daughter to WDW in June for her graduation and I wanted my boys to know they have their own trip coming up that she won’t be on, unless the June trip gets cancelled and we may end up with a full family trip combining the two. The hardest thing for my son right now is the distance learning. I actually have two sons on the spectrum. The less severe son is thriving on it, but my more severe son is not. He really likes the routine of school and riding the bus and he’s hating this right now.

 

[mamabunny]

I usually don’t talk firm Disney plans with my spectrum son until right before we go, so that if we have cancel dining, or Fastpass plans, he isn’t upset. We have a Disneyland trip scheduled for October that he knows about only because we are supposed to be taking my daughter to WDW in June for her graduation and I wanted my boys to know they have their own trip coming up that she won’t be on, unless the June trip gets cancelled and we may end up with a full family trip combining the two. The hardest thing for my son right now is the distance learning. I actually have two sons on the spectrum. The less severe son is thriving on it, but my more severe son is not. He really likes the routine of school and riding the bus and he’s hating this right now.

OK, so might sound silly, but would it help your more severe son if you kind of "recreated" the school day routine as closely as possible at home?

For example, even though he can't ride the bus, he can sit in a chair, and call it "bus time" and maybe he can describe what he would see out the windows, and who would sit where on the bus? He can even do the same things he would do on the bus, during bus time - if he typically reads a book on the way to/from home, then he can do that during bus time. Recreate his daytime school schedule (I know that a lot of distance learners have weird schedules right now) as best you can, right down to bathroom breaks, recess, lunch etc.

Routine is important to so many different kinds of people, myself included. You don't realize how accustomed you are to the rhythm of your days until it is completely disrupted.

I'm sorry he's having such a tough time. I hope you can find a way to make it more comfortable for him.

 

[tinkerbelletreasure]

Unfortunately, I am an essential worker and have to work everyday, so he’s with his dad who is a school teacher during the day. I’m not sure what his distance teaching looks like, but I know he’s got a lot of calls and videos in the mornings, so he can’t focus 100% on him.

 

[cobright]

Hi All-

Haven't posted in awhile...my poor DD13 has been looking forward to our April trip. Obviously this isn't happening nor would we want it to considering the circumstances (to say the least!).

I know it's going to be tough Saturday. Wish me luck!

Hope things turn/ed out alright. I would only advise you in this the same as any parent, try to keep the new situation within a framework the child can understand.

She understands the schools shutting down and she has to do her schoolwork from home. Let that transition do the heavy lifting for you in this new situation. It's much the same thing. Kiddo knows that something important has happened that keeps her from her normal classes. Keeps her shut down at home probably more than she likes, and she's coping. Hopefully she understands that the schools will be re-opening and she will be returning to her normal routine.

Now Disney World is taking the same reasonable precautions and she's likewise going to have to have the fun she was planning on having at WDW at home instead. Like the schools, WDW will reopen; and likewise you will plan a new trip when it does. In the mean time... I would make this suggestion to any parent, and not having a spectrum kiddo I don't know if this is bad advice to those who do, but... bribe her. This is a special circumstance and I've certainly been bribing myself with things to help me maintain sanity. Find out what it will take and make it appear. She have a Nintendo Switch? The new Animal Farm game? Seriously, right now it's about eating up some of those brooding hours and a few hundred bucks is an investment if you can make afford it.

Good luck.

 

[AutismTrek]

My son is moderately impacted by autism. He is not high or low. He keeps wanting to know what hotel are we going to stay in next(he doesn't care where just likes hotels). He is doing fine with the learning at home but hates any sort of online group/face time meeting. He is tired of being home and just wants to go sit at a restaurant and go shopping. Me too.

 

[ladyjubilee]

For us the concern is that my son is loosing the ability to be out and about. We've always made sure to be on the go, which opened the door for trips like Disney. Over the last two weeks each time we've gone for a ride in the car for drive thru at McDonald's he's has huge tantrums.

We've always been fortunate that we could go, but it's a skill that is fading the longer this gones on.