New autism diagnosis...nervous mom

[Tiffylv]

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[Sordicampos]

I don't have any tips, but I do wish you both a wonderful trip!

 

[MaggieMollyMom]

Hi! I too have a seven year old (girl) with autism...however diagnosed before age 2. Like you stated, he is the same child, but just knowing this new info is scary. Disney has been a great place for our family, especially our ASD daughter. She seems to have made gains after coming back from trips (going on our 5th trip in 2 months). Maybe it's a coincidence, maybe not!
You just have to remember to go with the flow. If he is verbal, First & Then may work well. Take a break mid day...go for a swim, nap etc. You might not get everything on your list done. Think about renting a special needs stroller.
In terms of the meltdowns, this is something every parent unfortunately goes through with their child with ASD. Even though they have autism, they can still have a "tantrum", just to get their way! I can tell right away when my daughter is in "tantrum mode" vs actual meltdown. Have you tried any ABA?

 

[nikkislaght]

I would get some head phones for him, you may not think loud noises bother him , but when you put them together with the visual noise, new smells, crowds. And new environment, noise level will play a part. And some of those indoor rides are loud! Watch YouTube videos on rides to show him what the are like, and look at videos of what it will be like walking around Disney. If he can see that there will be crowds it may help him work that out. I know you said it will be just you and him, but while inline, use yourself as a buffer , between you and other people, have a safe word that he can use. So when he feels that he is becoming overwhelmed, he can say his safe word and you can leave, without the pressure of him try to convince you he needs to leave. Have some visual cue card schedule made up, so he will know what you are doing that day, so it can be printed or hand written before you leave your room for the day, make a social story about your trips and the behavior you expect, I like using the website... The Waston institute , they allow you to download their social stories and then you can edit them inserting your own ideas, pictures and names etc,it's a free site. take a couple of small things for him to use/ play with while in line. Hope you both have A great time.

 

[lanejudy]

to the disABILITIES Forum!

We don't have an ASD diagnosis, but very similar. We've found that keeping as close to a typical schedule is quite helpful -- wake up at regular time, eat meals at regular times, bedtime as close to regular. It sounds like maybe you plan to do this anyway, with the naps (how great to have a 7-yr-old napper!). It does mean we don't do many fireworks or late evening stuff (DD has a relatively early bedtime), but we can usually manage 1 or 2 late evenings if spaced throughout the week -- depends how long a trip. Staying hydrated is important for all so we bring water bottles to the parks and refill with the free ice water at CS and use either MIO flavoring or the little powder packets. And plenty of snacks.

I believe you asked in another forum about quiet places to take a break or calm down. This guide to WDW for cognitive disabilities may be helpful for you as well. https://wdpromedia.disney.go.com/me...bilities-services/wdw_cognitive_guide_rev.pdf

Enjoy your vacation!

 

[aaarcher86]

Your son sounds a lot like my daughter, and we also had a similar diagnosis experience.

We try to keep everything as normal, schedule wise, as possible on our trips. Just know that you may have to throw your plans out the window at any time. We typically schedule a lot of character meals so that we can get some AC breaks and have some fun at the same time.

We set out really firm expectations pre trip. My daughter knows it she melts down or acts inappropriately, we go back to the room and she misses the fun. Sometimes she needs some reminders, but so far so good. But we are prepared to follow through.

The nervousness and apprehension is totally normal. I think going in knowing the things you already know, with a plan, and prepared, is the biggest key in making the trip successful.

 

[2tinkerbell]

Years before my DD was born I took a class in college. I don't remember most of the stuff taught in the class, but, I do remember this: Prepare More, Punish Less.

My DD loves to have her schedule written out and everything discussed to have it settled in her mind. While we are talking about her schedule, I also go through and discuss the appropriate behavior. Reading the cues is important. I can usually tell my DD is getting overwhelmed, frustrated or anxious. My DD is highly verbal. In fact, she is diagnosed with a Non-Verbal Learning Disability which is opposite of it's title. We discuss everything. I can tell when things are getting too much for her because she will begin to shut down.

You and I are in the same situation where it is just to 2 of us. In a lot of ways, things are easier. But in some other ways, it is harder. Teaching to share, take turns, you don't always get you way, etc. are hard for children with ASD and even more so when it is just to 2 of you.

Just a couple of books to help you through this experience:

Life Animated by Ron Suskind is probably the best book I've ever read. Just to point out that your son is "just like everyone else - only more so and less so." Also, your son is "different but not diminished."

The Explosive Child by Ross Greene. I am not saying your child is explosive but it helps put things into perspective. I wish I had this book years ago when my DD was struggling.

It's So Difficult To Be Your Friend by Rick Lavoie. I love everything I've read from Rick Lavoie. Very pragmatic and offers great insight and suggestions on how to help your child manage their world - not only socially but in every day.

I am sorry this isn't much help with your upcoming trip.

 

[danielephant]

my little guy has autism and it will be our first trip since his diagnosis as well...I wore him on my hip at 7 months and 19 months and I just thought he was a trooper. He is a sensory seeker so he loves to be touched and squeezed which makes soooo much sense now looking back the kid didn't get down to crawl or walk at all He was just Owen to us. This trip i am concerned about for the same reasons I do plan on getting the pass put on our magic bands from guest services just in case. He is just now only saying 2 word phrases and will be 5 in june. So we have a long way to go but he is working his tail off! He only had 5 words when we started speech 3 years ago. anyway...listen to me draw on about my boy!

If your little guy is verbal like you say, make sure you are constantly talking to him reassuring him and asking how he is feeling. If something is off for his body he can let you know and you guys can book it out of there. You will have so much fun! Autism is just a diagnosis. you know your little guy better than anyone and if you booked this trip you already know he is going to love it! Hang in there momma! If you need anything or have any other questions feel free to ask

 

[Tiffylv]

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[Tiffylv]

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[MaggieMollyMom]

You can rent a special needs stroller from several companies...Kingdom Strollers, Orlando Stroller Rental etc. Depending on his size, a regular stroller may be too small (especially height wise).....you might want to consider the ones with a large shade...the one that was the best for my daughter is Britax B-Agile...large shade which works like a cocoon for her to escape. She still fits in hers weight wise (she's quite thin because of just not being a good eater) but tall...so we may look at the special needs stroller (we would have to rent 2 because of her twin sister who has RA and some other physical issues).

all the best

 

[milza26]

I agree with all the posts above and their advice. Something I found helpful for my 9 year old son with Asperger's, when prepping for our first trip last year, was " to train for Disney". For us that meant take long walks and practice standing in lines. WDW is a magical place in which everyone seems to be nicer than the real world. You will not have the only child there that has the potential to meltdown! That idea for me was very comforting. Bring a small piece of home to make things seem the same as home. For example my son is a fan of stuffed animals, so we brought one from home to help sleep in a new place. Last thing I have to say is have fun and you will be alright because you can do this!

 

[aaarcher86]

I agree with all the posts above and their advice. Something I found helpful for my 9 year old son with Asperger's, when prepping for our first trip last year, was " to train for Disney". For us that meant take long walks and practice standing in lines. WDW is a magical place in which everyone seems to be nicer than the real world. You will not have the only child there that has the potential to meltdown! That idea for me was very comforting. Bring a small piece of home to make things seem the same as home. For example my son is a fan of stuffed animals, so we brought one from home to help sleep in a new place. Last thing I have to say is have fun and you will be alright because you can do this!

Great idea. We ended up relating everything back to Disney.

Waiting in line at the store - "the lines might be a little longer than this, but you're doing a great job. Keep practicing how you'll stand in line at Disney!"

 

[DisneyWishes14]

My DS was diagnosed with ASD when he was 3 years old. I have taken him to WDW multiple times a year since he was 1 and I often travel alone with him. You've gotten some GREAT advice on here, but I just wanted to offer my support to you! I know it's very overwhelming. We used a stroller at WDW until my DS was 6. We rented from Kingdom Strollers as they offer strollers for bigger children and will deliver right to the resort. The stroller was a life saver for both of us. It offered him a quiet place to sit and relax and offered me a way to get him around or out of the park quickly if he simply needed to leave. The DAS in combination with FP+ has worked very well for us. Most days, my DS is only up for about 3 or 4 rides anyway, so that works well. Going at your DS's pace is really a great idea. It sounds like you are very in touch with your DS, so I think you will do just fine!

As far as daily life, we've been working with a behavioral therapist since my son was 4 and she has been a lifesaver for us. She has worked wonders with my DS and has also taught me how to act and react in certain situations. With her help, I feel a little more confident in our day-to-day living and don't feel so overwhelmed anymore.

I wish you a wonderful vacation with your DS!

 

[DisneyWishes14]

My DS was diagnosed with ASD when he was 3 years old. I have taken him to WDW multiple times a year since he was 1 and I often travel alone with him. You've gotten some GREAT advice on here, but I just wanted to offer my support to you! I know it's very overwhelming. We used a stroller at WDW until my DS was 6. We rented from Kingdom Strollers as they offer strollers for bigger children and will deliver right to the resort. The stroller was a life saver for both of us. It offered him a quiet place to sit and relax and offered me a way to get him around or out of the park quickly if he simply needed to leave. The DAS in combination with FP+ has worked very well for us. Most days, my DS is only up for about 3 or 4 rides anyway, so that works well. Going at your DS's pace is really a great idea. It sounds like you are very in touch with your DS, so I think you will do just fine!

As far as daily life, we've been working with a behavioral therapist since my son was 4 and she has been a lifesaver for us. She has worked wonders with my DS and has also taught me how to act and react in certain situations. With her help, I feel a little more confident in our day-to-day living and don't feel so overwhelmed anymore.

I wish you a wonderful vacation with your DS!

 

[Anesthesia Fine]

I admire every post you make about how you handle your kiddo. You're so proactive! You've gotten a lot of good advice on here; I'll second all of the stuff about prepping him ahead of time and bringing something familiar.

Day to day stuff can be hard. My daughter has ADHD and while it's pretty manageable now, the early years were tough and I made a lot of mistakes. But I did learn not to overwhelm her with too much information. Instead of saying "OK, first we have breakfast, then we hit rope drop, then we go to X, Y, and Z rides, then lunch..." we say "OK, this morning's plans are breakfast, the monorail, and I think our first ride is X!" (Or for day to day stuff: "ok, first we hit the car wash, then Target.")

I hope you guys have a blast!

 

[milza26]

Great idea. We ended up relating everything back to Disney.

Waiting in line at the store - "the lines might be a little longer than this, but you're doing a great job. Keep practicing how you'll stand in line at Disney!"

It is nice to hear others relate things back to Disney too! Sometimes I feel odd talking to people who don't understand the love of Disney or what is helpful for our family!

 

[CJN]

And remember, if a meltdown does occur it's not the end of the world. Been there, done that, picked ourselves up and had fantastic trips. While it's a horrible feeling if/when it occurs, we laugh now at the entertainment value we must have provided to the tongue-clucking, head-shaking folks with "perfect" children.

 

[Tiffylv]

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[lolabee2000]

DS is 11 and was diagnosed when he was 4 with autism. He is between non-verbal and verbal. He HATES loud noises like fireworks and is extremely picky with his food. We will be going for Halloween this year and this is his 5th visit. I learned early that all of the planning we did sometimes had to go out the window based on so many different things. I still studied all of the restaurants and rides to see what he would like just in case. We brought headphones for him and as the visits have gone on I find we need them less and less. He always brings a toy with him for security either a stuffed animal or a car. We know that we have to leave by dark and miss the fireworks because he hates them, but he is just so excited to be there that we don't seem to have many meltdowns. We have had them and it just is what it is. I love what someone said about providing entertainment to those "Perfect people". It's so true and you just go with the flow. We do behavior therapy and OT and speech, but I often think that our yearly trips to Disney is the best therapy he could receive. Good luck with your trip!!!!