Advice, support and virtual hugs needed

[k8Davies]

Hi all

I have a beautiful, fantastically funny and vibrant nearly 3 year old DS. He's has some development problems and we are currently seeing a speech and Language therapist (as he doesn't talk and Finds communication in General is a challenge) and early this week at our session she sat us down to talk to us as she wanted to refer him as she believes he's Autistic.

So firstly I need the hugs, as it was a bit of a shock, obviously I had worries but for someone to say it out loud was a blow.

So we filled in the paperwork to get him officially assessed, although due to us being in the UK we need to wait probably up to 18 weeks to get him seen (Know it's a long time but in fairness the NHS is wonderful and they only have limited resources so waiting is what we'll have to do).

But due to the delay we won't have the official clarification before we go away.

I was going to, nearer the time, ask for advice due to his speaking and communication issues - especially around character interaction as I know there'll be some who will really get him excited (Sophia the first - think he has a crush)

But dining can also be an issue and so can queuing (but we are there for two weeks so we are going to use our maximum fast passes on stuff we know he'll enjoying doing).

Basically I'm a bit of a mess and worrying and stressing about thing unnecessarily (probably) as currently feeling helpless and trying to control things beyond my control.

Sorry for the over-share but need to get it out and any advice will be really helpful. As I love Disney and want my DS to get the same enjoyment as I do, from the trip.

 

[Eynsteinp]

I know it can be difficult but I am sure that it will all work out. I have a 14 year old son who is on the spectrum and have been taking him to Disneyland and Disney World since he was younger than your son. The best thing I can tell you is that every child is different. My son did not like the characters and never wanted to interact with them. At 14 he still hates seeing the characters and gets upset when his sister makes us stop so she can see them. I think the biggest thing you need to do is just keep your expectations in line. Take breaks throughout the day and go back to your hotel to rest and decompress in the middle of each day. It's great that your going for two weeks as you won't feel that you have to be in the parks from opening to closing in order to get in the attractions you want to see. Be aware of the schedule because he may not like the loud noises that come with fireworks so plan accordingly. You can get a DAS pass without an official diagnosis. All you need to do is go to guest services and explain that he has trouble with queuing and they will give you a DAS pass so you do not have to wait in the line itself. I find DAS to work really well. I know its a bit of a shock but your son will love his trip and so will your entire family. Just have a plan to break up the days and allow him breaks away from the noise and action of the parks. Good luck and feel free to ask any specific questions you may have.

 

[gap2368]

I am sending you a virtual hug Things will be OK you will have a good trip will it be what you thought it was probably no but you will make memories you will have a great time with your family

a few things every one on the spectrum is different
think about what bothers him in life dose loud or noise either him if it dose you might want to bing ear protection for him
dose light then a baseball cap or huddy
as the PP said look in to getting him a DAS card if you think that would help and maybe a stroller as a wheel chair so he has a safe place to go.

 

[ez]

We live close to disney and went to WDW all the time with my older (now grown) kids. Then when my youngest with autism came along he was oblivious to even being in the parks. it was disheartening to have him study a piece of lint in his hand as a toddler rather than being able to take in where we were or even look around . Im guessing it was sensory overload for him and he had to tune out, we stopped going for many years. Now my son is 12 and for the past couple of years he has been really happy to go although he can only do a little bit each day we go. I agree that every kid is different and things will probably change as the kids get older. Good luck.

 

[Baklava]

First of all- it will be okay. All of it. Disney, school, friends, life in general... it's all going to be okay. Right now is a little scary, but autistic kids can thrive and families can adapt to their quirks and needs. The little stinker in my user pic is now six and prepping for her first season as a competitive skater. She talks constantly, she has a couple good friends, she thrives academically in our homeschool. We were afraid she'd never do half of this and she's soaring. This was a kid we were afraid would never be verbal. It will be okay. You will figure out what works for your kid and what he needs to thrive in his own way and meet whatever challenges he has. You've got this.

For the Disney specific stuff, start by dismissing the concept of a diagnosis. Don't worry about what he does or doesn't "have." Look at what he *needs.* It doesn't really matter if he is diagnosed autistic or if he just has the same needs as a kid who is diagnosed autistic. If his needs are beyond what every three year old needs, that's enough. (All 3 year olds hate waiting. That's not a special need. Not all 3 year olds get stressed out and start flapping their arms uncontrollably.)

At three, it is super common for kids not to speak to characters. I found that warning a character or handler that, "she's non-verbal" was enough. Princesses automatically switched to yes/no questions and open ended statements. We have a great picture of the aftermath of Ariel saying, "I bet you like to dance. I'd love to see you dance." (Cue Cupcake turning around and shaking her booty in the face of a very startled princess.)

If you believe he's going to struggle with queues, figure out *why* and present that to the CM at guest relations. They don't care what his diagnosis is. They can't ask. What they need to know is things like, "He needs to be able to wait for a ride in a quiet place outside the queue" or "he has sensory issues and needs to be able to remain in his stroller" so they can issue a DAS or Stroller as Wheelchair tag.

Dining... it depends on what his issue is. Can he not sit still? Counter service with outdoor seating. Does he need to eat at set times? Table service with ADRs. (Cupcake needed to know where we were eating and when. "Winging is" is right out.) Remember snacks and hydration.

 

[nikkislaght]

My son is 11, at 10 he as diagnosed with ASD. although I had been saying since he was two that he was autistic. and even believing in my heart he had it, when we got the diagnosis it was still a slap in the face.. so hugs to you !

prepping him will be key to a good trip. I don't know if you have heard of a program called board maker, but there are plenty of pins on pinterest that will give you lots of visuals so that you can make communication boards..

https://www.pinterest.com/nikkislaght/autism-stuff/


2dolearn.com will also give you free visual board stuff.
This is the front page of a board I made..

I cut the pictures and laminate them, then put Velcro on the back.. then I have a grad where you can move the picture as it is needed. etc.. very easy communication system for non verbal people..

practice being in lines.. youtube Disney and what rides there are.. and the show him how to approach the characters ..via the videos..



make a social story for him about travelling to Disneyland.
take fidget toys..
my husband and I have to stand on either side of our son while standing in line so he has room to flap.. and not have anyone else touch / crowd him. he uses a hoodie and sunglasses to cut down on both visual and noise pollution.. we take plenty of crunchy snacks with us, and take lots of breaks.
hope you have a great trip..

 

[PatMcDuck]

My #2 son was speech delayed, and went to special pre-school. But his speech caught up by age 5. We found out later, when he was 8 or so, that he was ADD (not ADHD, so it was more difficult to pick up, never acted out, etc) So, maybe it is too soon to say whether your son is autistic or not. I have another son, #3, who IS autistic, and has down syndrome. And speech delay was just one part of it, he had the self stim behaviors, lack of eye contact, etc etc.

So hang in there, it will be ok! And at WDW, just take it at his pace. Characters always try to talk to my now adult son (the one with autism and DS) and I sometimes lean in, and tell them he does not really speak, so they are aware to just talk to him and not repeat themselves (as if he did not hear them) and not wait for him to answer. (Not that it is necessary for me to do that). For lines, many kids with autism, or ADD, like to use the stroller as a wheelchair, to have some space, and to play with electronic games. I know, that seems awful to do while at WDW, but I mean in the lines, not all day.

 

[CynJ]

I don't have children so I have no helpful insight - but have a virtual hug, that had to be so hard to hear.

As far as your trip I might emphasis focusing on the things he does enjoy once he gets there. It might mean that an ADR gets missed or a something one of the adults wanted to see gets cut for time. But if he's enjoying an acrobat show or a dancing fountain or is absolutely fascinated by Devine in AK (lol my friend's 6yr old autistic daughter totally fell in love with Devine- so much so that she was Devine for Halloween two years in a row after loudly communicating, a rare thing, that she did NOT want to be a princess) then just go with the flow and enjoy his enjoyment of the magic.

 

[mamabunny]

Here's a (((hug))) from me.

"Normal" is a setting on the washing machine.

Please don't let that define you or your darling baby. I'm not "normal". Never really have been, and sure won't ever be in the future. That's OK.

My mom was a Special Needs teacher, and she told me once that everyone has something. Everyone - every human on the planet - has something "wrong" with them. It might be that they have a hard time with math. Maybe they are dyslexic. Maybe they are color blind. Maybe their legs don't work right. They don't have a sense of humor. They can't remember a joke to save their life. They have no sense of direction. It doesn't matter - no one is perfect. Everyone has "something" Some people just hide their "something" better than others.

So don't let your child's "something" define him. Continue to celebrate all that makes him so special, so precious. As he grows up, make sure he knows what his strengths are, and how to best use them. Give him all the tools you can to go out and conquer the world, and he will.

(((hugs))) You, your son & your family will be fine, I promise. You just need to get past the shock of hearing someone else say what you were worried about.

 

[k8Davies]

Thank you all so much for the support, advice and definitely the hugs - although might not have been best to read the responses at work as I got a bit teary - the support is really appreciated.

Oh and @mamabunny I am definitely stealing that quote "Normal is a setting on the Washing Machine".

It's nice to know other people have been through it and it will be, he will be and I will be fine (Thanks @Baklava )

Good to hear that Disney is geared up for this type of thing and the advice on planning will real help.

I will definitely need to stick to things he like and what he feels comfortable with. Although as this is is first trip (well last time we took him he was a baby so was in the pram the whole time), there will probably be a few hiccups but I think I've got an idea of do and don'ts...

I know after a recent trip to the Cinema that Theater film type of attraction, like Muppets and Bugs life will not be the best idea.

Where as at a recent local fair he loved a couple of attraction that went round and round, so Dumbo and astro orbiter should be a big hit.

I have got ear defenders which I will take and have on me at all times and just accept at times there will be melt downs as there are at home.

Queuing might cause a problem is some areas, it will probably depend on the type of queue and how busy it is - as I think POTC will be an okay ride but as the queue is dark and when it busy is quiet close stuff like this will distress him, so unless I have a FP or the wait time is less than 10 minutes, i'll give that a miss. where as outside queues might be a bit easier as he might feel he's got more space.

characters will be another testing ground, thanks for the advice, I will definitely tell them that he's is non-verbal and he's not so great if people talk to much at him and that he not fond of Hugs, but prefers High fives.
.
Dining might prove difficult as he's not brilliant eating out especially if it's too busy. I tried to book my ADRs for quiet (well Quiet for Disney) times. Also I hope the restaurants can be accommodating, as it better if I can get a table that is slightly out of the way, or even, though there are only 3 of us, a booth so he's more enclosed.

After reading all your great post I know now that we are going to have a good time, and the only thing that can stand in the way of that is me worrying to much. He's a bundle of fun and loves to run about so with so much space around the parks he be grand

 

[k8Davies]

My son is 11, at 10 he as diagnosed with ASD. although I had been saying since he was two that he was autistic. and even believing in my heart he had it, when we got the diagnosis it was still a slap in the face.. so hugs to you !

prepping him will be key to a good trip. I don't know if you have heard of a program called board maker, but there are plenty of pins on pinterest that will give you lots of visuals so that you can make communication boards..

https://www.pinterest.com/nikkislaght/autism-stuff/


2dolearn.com will also give you free visual board stuff.
This is the front page of a board I made..
View attachment 185955
I cut the pictures and laminate them, then put Velcro on the back.. then I have a grad where you can move the picture as it is needed. etc.. very easy communication system for non verbal people..

practice being in lines.. youtube Disney and what rides there are.. and the show him how to approach the characters ..via the videos..



make a social story for him about travelling to Disneyland.
take fidget toys..
my husband and I have to stand on either side of our son while standing in line so he has room to flap.. and not have anyone else touch / crowd him. he uses a hoodie and sunglasses to cut down on both visual and noise pollution.. we take plenty of crunchy snacks with us, and take lots of breaks.
hope you have a great trip..

sorry forgot to say love the Visual board idea. we've already started using a few flash cards to help him express what he wants so might do a few especially for Disney - will also give me a go excuse to some Disney craft.

 

[Hoodie]

It's always hard to hear those words. When my son was referred, they were still breaking out diagnoses - PDD-NOS, Asperger's etc. After the initial testing they diagnosed him with PDD-NOS. By the time they finished everything, the standard had moved to put all the variances under just "autism." It was just weird timing - 6 months later we never would have even heard PDD-NOS. Even when you know they are testing and already have an initial diagnoses, it was still shocking to see it in black and white.

My best advice is to follow his lead. The first trip we had, he LOVED the characters. The second, he wouldn't get near them. Don't be surprised if he wants nothing to do with the characters (big versions of their "friends" can be a bit off-setting.) We spent over an hour on Tom Sawyer's Island because there is a playground and fort and is relatively quiet. Get a stroller with a hood that pulls down. Our son would just retreat there for a bit for his "safe space." Have a grocery delivery with food you know he'll eat - you can bring it into the restaurants (they won't warm it, so it has to be something that's ready to eat) - and don't stress about whether he eats bananas and crackers for 2 weeks or if he refuses to try anything off a menu. He'll be back to a routine when he gets home.

The other thing is he may surprise you. For some reason, even with the craziness of Disney, our son thrives there. Other than the eating (which honestly is an issue no matter where we go) and retreating once in a while, most of his days are "normal."

The DAS helps tremendously. We didn't get one until halfway through our last trip when he was getting tired and wish we had gotten it from the beginning. You can chose to use it or not, but having it as an option is wonderful.

We also found that books helped. We read about going through airport security, plane trips in general, and of course Disney stories. I still think his favorite "ride" was the Disney buses. It will be fine!

 

[DrunkJam]

*hugs*
We are in Uk too, and when we first went to WDW, DS was not QUITE diagnosed (he is also autistic, and is 9 now, this was 6 years ago)
It didn't matter.
I mean, we struggled for three days, and then we asked for a GAC (which is a DAS now) We explained the problems we were having and the help we needed, and everyone was super helpful. The GAC REALLY helped us. And even in restaurants and in the hotel, staff were willing to go out of their way to help us and make sure we ALL had a good holiday. (And also, that he ate!)
I really do know how you feel, and I m here, if you want to ask anything, or talk about anything UK ASD DX related (with or without masses of initials)
Have a wonderful and relaxing trip.

 

[k8Davies]

Thank you all so much again..

Honestly just reading your stories and having a bit of extra support/hugs, from people who don't have to help but do because you're all lovely has made me feel so, so, so, so much better.

As most of you who been through this know it just a bit stressful but to get some info, some advice, suggestions and shared experiences lets me know this trip will be amazing - so now I can go back to looking forward to our family time with the mouse

 

[mistysue]

I want to tell you a bit of our story because it may help. My youngest was born with severe low muscle tone and from the start had clear sensory troubles. At 5 still only eats maybe a dozen things and will vomit at tongue contact if something is the wrong texture. He was being sent to physical therapy by the time he was 6 months old. He got into our school's early toddler program as young as possible. In that program, they did speech, physical, occupational, sensory and food therapies. By the time he hit 18 months the class was FULL of children with an autism diagnosis, most of whom today are doing much better than my son is. By the time they were 2 1/2 many of those kids you would not have noticed as any different than your average kid. Of course there are exceptions, kids all grow and respond differently.

I bring it up because have a LOT of great therapies for autistic kids now. To that point where there are many families who get a diagnosis and later say their child is cured. For the behavioral therapies, I would pick up some good reading and start working with your child right away. The earlier you can start to intervene the better on average your long term outlook. The whole thing is especially interesting to me because I see my son, who has been evaluated by dozens of specialists and we've had him referred and specifically evaluated for autism three times. I've had the local schools tell me he's autistic but they can't diagnose and a daycare try to kick him out because they thought I was in denial and refusing to get him treated for autism. All three times they have come back and said it isn't quite autism, but definitely right there at the edge, twice specifically saying "he is just very quirky". I am always going to wonder- if he hadn't already gone through all the autism therapies in the 12-36 month range would he have an autism diagnosis? I honestly think he would. The moral of the story is that working with the child's needs and taking on any available therapies to help him figure out the world really does make a difference.

He does Disney just fine. We keep a stroller with us- have not done the DAS at all because he's too short for the big line rides. If you do fastpasses you may be able to figure out whether lines are likely to be an issue, we don't usually wait more than 15 minutes or so which is usually 15 minutes moving and playing with interactive features. We also schedule TS non-character lunches as a temperature controlled mid day relaxing break.
Our biggest issue to date has always been our daughter who like your son has significant communication trouble and speech delays. I make her a chart for what our plans are and print her our own maps before we go. I actually use the cheat sheet maps from easywdw because he color codes for best time of day to go on rides, so she knows "it's the middle of the day, if I want a red ride the answer is no" Unexpectedly we also had to explain to her in advance that when you are right outside the park it looks like you're not at the park... this has been an issue at both EPCOT and MK for her, where she thought we lied about going to Disney and refused to enter the park for at least an hour at both locations. I don't know where she thought we were, but was sure I was a terrible mom playing a trick on her.

 

[Paula Sedley-Burke]

Sending you virtual hug. We are also from the UK. We aren't blessed with children but I am a 45 year old disabled austisic lady. I did not talk until quite late. I manage it as an adult. My wife and friends are very supportive and know I do not mean offense when I do not want to be hugged, socialise in large groups etc.

So I like to eat my carrots on the right side of my plate, but I have a first class degree in Psychology. It requires managing and understanding but it's not a life sentence that has to hold you back.

Of all places I find America the easiest for me. They cater very well for my needs without question. Here is another matter...

 

[SueM in MN]

This thread has everything to answer your questions about DAS.
The first post in the thread is up to date, but don't bother reading further - the est of the thread is from just before and just after DAS came into use. It contains a lot of conjecture that didn't come to pass.
http://www.disboards.com/threads/wd...15-digital-das-on-tickets-magicbands.3178976/

 

[k8Davies]

Thanks @Paula Sedley-Burke its really great to hear people own personal stories around this,

And thank as well to @SueM in MN that link was really helpful.

Actually had a really positive weekend, now I know my son is obsessed by all this fish related and Aquariums are a big hit, so I know the Living Seas will be a favorite while we're away so knew Epcot would be a win.

But this weekend we visited as Safari and Animal park down in Sunny Kent and he absolutely loved it, it was a such a great day out.

With only two minor hiccup, he ended up accidentally hitting another child, as he got so excited and started doing his flappy arms, the other mother was great about it which was good. Also the we went on a safari jeep and he thought it was the best thing ever. But as he was so excited and kept flapping had to stop him kicking the chair in front (took his shoes off and it was so bumpy don't think they notice too much).

It was such a good experience, he loved the fact he had the freedom to walk about and go up to the enclosure/habitats and just look at his own pace; and because he was between his Dad and I the jeep ride was just so amazing for him.

I'm now feeling more relaxed, as I know that Animal Kingdom will be a must do and on more than one occasion, although might ask on the Kilimanjaro Safari if we can go in the front row, just to save someone having their seat kicked all the way round lol

Honestly again, thank you all so much for your help and support it is really, really appreciated.

 

[gap2368]

Yes if you ask you can sit in the front row I ha e to do this because of my disability and they have never had a problem with this you may have to wait an extra turn

 

[Eynsteinp]

You can definitely ask for the front seat. My son will only sit in the front seat or he will skip the ride regardless of how long the wait was or how much he wanted to ride the ride. Just ask and they will accommodate this request without any problem.