Need advice on taking daughter to Disney with Developmental Delay & Sensitivity

[AlternateEgo]

We are planning a trip to Disney in September.

I have 9 months to plan, but I have had a small issue hanging over my head and I really need to get some assistance.

My youngest daughter has a developmental delay. Her speech and understanding isn't at a 4 year olds level. She hasn't been diagnosed as autistic (which a lot of people ask me). The only thing she has been diagnosed as, is "low muscle tone" - very late talker, crawler, walker, etc...

She gets very scared when we see costumed characters (Chuck E Cheese), Santa, and recently the Grinch. In the past, she was okay with face characters (Cinderella & Price Charming). I know that this could possibly cause her to get upset, bringing her to Disney World, but I am pretty sure for the most part we can avoid Character dining and getting in lines to meet them, besides the face characters. (If she doesn't want to see a character, her sisters would still be able to)

She doesn't like rides at all. She likes to watch them and will wait on the side for her sisters to ride, but she just doesn't like to experience them. I have not tried to take her on a ride with me, as the last experience was at a local fair. Even the rides at Walmart (horse, dumbo, etc.) she doesn't like and wants off immediately.

All of these things can be controlled while we are at Disney with minimal tantrums... but the one thing I am most concerned about... is taking her on a plane.

Is this something I shouldn't even consider. She is very good in the car, but I am afraid that the motion of the plane with upset her. I have even considered asking her doctor about prescribing a medication.

She is such a calm and loving girl, but has certain sensitivities and with her speech slowly coming along, she sometimes has a hard time telling me how she feels and what can make it better.

So what have you found to help prepare children for the Disney World experience? Thanks for any information...

 

[brergnat]

I have two boys, 5 and 3. The three year old (will be 4 in March) is like your daughter, sort of. He has a MAJOR speech/language delay. His older brother has Autism. My younger son LOVES Disneyland...older bro, not so much. DS3 likes the rides, but only the ones that have a partial "outdoors" factor. He is afraid of the dark (freaked on POTC 2 days ago...hadn't been on since he was a baby and he did NOT like it). Ditto for Haunted Mansion and stuff like Buzz Lighyear. However, he does love Toy Story Midway mania...

I have found through much trial and error to just take him on the ride (not really going too much into it prior to), and comfort him as best as I can IF he seems distressed. Then, AFTER the ride, I ask him "was that FUN or SCARY." He has enough language to answer that, and if he answers "SCARY", then I say "Ok, NO more (blank)" I stick to it too, and won't take him back on until HE says he wants to.

Neither of my kids are "into" characters (thank goodness!). DS3 likes Mickey and Pluto a LOT, though, so we will go stand in line for him if it's not a long line, and he'll give them a hug. Older DS, has NO interest in the characters, save for Pluto, since he loves dogs. You can have a very enjoyable time at the Disney Parks without direct character interaction. When DS5 is along, I will just point out the character and say "let's wave to (whoever)", and we just keep walking. Satisfies them both.

As for the plane, that was a HUGE anxiety for me too. DS3 has major noise sensitivities (cries when a blender or coffee grinder is on, afraid of the vacuum, car horns, etc.). Plus, he has this thing where he HATES to take his shoes off when we are out of the house (security line at airport). I was so scared of the "roar" of the plane. BUT, turns out I was needlessly worried. Both the boys were so fascinated with their first plane ride, that they were the best behaved kids I've ever seen on a plane. The only bothersome thing was the ear pain upon descent. Brought Dum Dum lollipops for that, and seemed to help somewhat. Othewise, he sat in his carseat (he's very antsy, and I needed him to know a plane was NOT a place to climb all over), looked out the window, and was very pleasant the whole flight.

 

[AlternateEgo]

Thank you, brergnat! You really lifted some anxiety off my shoulders.

Any ideas on what I could do to prepare her for the trip?

I have been told "board books" but didn't get much of an explanation in reference to it.

 

[AJKMOM]

I have a friend who, with the teacher, used a story board to introduce travel. They actually told him it was a bus, because he would go on one of them. He was perfect.

 

[ireland_nicole]

just as an option, you're not too far to drive. We drive 19-20 hours each way to Disney, and the kids so surprisingly well. We usually leave in the afternoon, drive through the night while they sleep, and arrive before lunch. Then we have our car and our carseats (super important to DD) for the trip, so we don't have to depend on Disney transportation. There are lots of great things to make flying easier, just wanted to present the drive option.

 

[bookwormde]

AlternateEgo

One of the least understood areas is propreceptive(sp)sensory differentials, basically it is how our children perceive their bodies. This leads often leads to late developmental motor (talk, crawl walk), internal sensory (toilet issues, coordination in general) and which one manifestation is low muscle tone. If her speech is progressing that is a good indication that she is capable of adapting to these differentials.

For the plane we did extensive prebriefing about the airport process and the plane environment, so that our son would be as informed and comfortable as possible. If at least one of the parents is a comfortable flyer that helps a lot. I would recommend using a disability preboard (if you are not familiar with this let me know and I will provide detailed information) so that you can get settled before if gets crowded and so she has more time to get acclimated. For most of our kids anxiety makes all sensory issues 10x more problematic. Do not underestimate the impact of the desire to “go to WDW” as a moderating factor for your daughter to have the extra strength to manage the airplane flight. When we preboarded we briefed the flight attendants that it was our child’s first flight and that he had sensory and anxiety issues, you would be amazed how support they are (we fly SW). We considered medication but decided the disorientation might make it worse, in the end he did great. Of course we brought along lot of his favorite electronics to help occupy him

In the broader picture from your brief description, it is very likely (probably 80%+) that what you are seeing in your daughter is Autism genetic characteristics. Since it sounds like she is in the HFA/Aspergers end of the spectrum, It is not uncommon for many children to never have a formal Autism diagnosis, but instead just have the individual characteristics diagnosed and managed.

I am assuming that from your description that she is receiving speech, OT and PT therapies so that is the majority of what she would be receiving with an AS diagnosis.

Higher functioning kids, particularly girls often do not get a diagnosis until they are in the societal social world (school) and the complexity of the social demands (combined with sensory and EF challenges) overwhelms the and anxiety becomes a serious manifestation.

I would strongly reading Tony Attwood’s book “The complete guide to Aspergers” C/2007 available on Amazon for about $17, even if by chance it turn out that your daughters characteristics are not related to Autism genetics, it is still the best resource for the challenges your daughter is facing. The great thing is that if it is HFA/Aspergers there are many amazing gifts that go along with these genetics (her “nature” which sounds very much like my son is one of them). It is important to remember that most of the technological (inventive) advancements and a lot of the “heightened social conscience”, comes individuals with Autism genetics. If she has not already had an auditory processing evaluation (this has nothing to do with the ability to hear) would be helpful and can provide invaluable recommendations. Over in the community board we have lots of parent (with children both AS diagnosed and non diagnosed) facing the same issues that you are so come visit us.

WDW is a magical palace for our children, when it is “managed' appropriately for their specific special needs.

I notice you DH has a FF symbol, I have 32 year in as a volunteer firefighter.

Happy planning,

bookwormde

 

[AlternateEgo]

AlternateEgo

One of the least understood areas is propreceptive(sp)sensory differentials, basically it is how our children perceive their bodies. This leads often leads to late developmental motor (talk, crawl walk), internal sensory (toilet issues, coordination in general) and which one manifestation is low muscle tone. If her speech is progressing that is a good indication that she is capable of adapting to these differentials.

For the plane we did extensive prebriefing about the airport process and the plane environment, so that our son would be as informed and comfortable as possible. If at least one of the parents is a comfortable flyer that helps a lot. I would recommend using a disability preboard (if you are not familiar with this let me know and I will provide detailed information) so that you can get settled before if gets crowded and so she has more time to get acclimated. For most of our kids anxiety makes all sensory issues 10x more problematic. Do not underestimate the impact of the desire to “go to WDW” as a moderating factor for your daughter to have the extra strength to manage the airplane flight. When we preboarded we briefed the flight attendants that it was our child’s first flight and that he had sensory and anxiety issues, you would be amazed how support they are (we fly SW). We considered medication but decided the disorientation might make it worse, in the end he did great. Of course we brought along lot of his favorite electronics to help occupy him

In the broader picture from your brief description, it is very likely (probably 80%+) that what you are seeing in your daughter is Autism genetic characteristics. Since it sounds like she is in the HFA/Aspergers end of the spectrum, It is not uncommon for many children to never have a formal Autism diagnosis, but instead just have the individual characteristics diagnosed and managed.

I am assuming that from your description that she is receiving speech, OT and PT therapies so that is the majority of what she would be receiving with an AS diagnosis.

Higher functioning kids, particularly girls often do not get a diagnosis until they are in the societal social world (school) and the complexity of the social demands (combined with sensory and EF challenges) overwhelms the and anxiety becomes a serious manifestation.

I would strongly reading Tony Attwood’s book “The complete guide to Aspergers” C/2007 available on Amazon for about $17, even if by chance it turn out that your daughters characteristics are not related to Autism genetics, it is still the best resource for the challenges your daughter is facing. The great thing is that if it is HFA/Aspergers there are many amazing gifts that go along with these genetics (her “nature” which sounds very much like my son is one of them). It is important to remember that most of the technological (inventive) advancements and a lot of the “heightened social conscience”, comes individuals with Autism genetics. If she has not already had an auditory processing evaluation (this has nothing to do with the ability to hear) would be helpful and can provide invaluable recommendations. Over in the community board we have lots of parent (with children both AS diagnosed and non diagnosed) facing the same issues that you are so come visit us.

WDW is a magical palace for our children, when it is “managed' appropriately for their specific special needs.

I notice you DH has a FF symbol, I have 32 year in as a volunteer firefighter.

Happy planning,

bookwormde

Thank you! I will look up the book.

Keeley has been receiving OT, PT, & Speech (Plus Developmental Therapy for awhile) since she was about 15 months old. She has been going to Early Childhood since she was 3 and was in Early Intervention program before that.

I would always ask them what they felt was her diagnoses and they would say just "low muscle tone". It would annoy me since there wasn't much I could do to help her along, besides the usual exercises and play. I had asked about autism and that was always a no.

I am wondering what you mean about "high functioning" and will be looking up this information.

As far as the disability preboard, I am definitely not familiar with it. I don't actually have anything to go from saying she has a disability, nor would I know where to obtain one.

And yes, DH is a volunteer firefighter as well. I am not sure how many years he has been doing it, but his uncle used to be the chief (retired). DH's cousin, Sister, & BIL are all firefighters as well.

 

[bookwormde]

You do not need anything formal to get a pre-board it is based on self-identification.

Typically they are available from the airlines customer service desks in the concourses. You just present it and board first with the rest of the individuals with disabilities. It also provides protections from being removed from an aircraft because of manifestations of the disability as long as it does not constitute a safety hazard.

Yes firefighting tends to run in families (especially Aspie families), I am a chief right now and my brother was active for many years.

Once you read Attwood you will be in a much better place to understand spectrum genetics. If you have any other questions please feel free to ask.

bookwormde

 

[Marina Del Rey]

I've read the book and other books similar to it. Keep in mind that your daughter is an individual, not a textbook.

No worries about costumed characters. You go to them if you choose to.

Your vacation should be fantastic!

 

[P&B's Mom]

My DS sounds a lot like your DD. He began EI at 15 months and received all of the services your DD is currently experiencing. Our first trip to WDW was very stressful because he didn't want to experience everything that my older DD wanted to but the adults in my family (4 on the trip) took turns with him and it worked out fine. I was also afraid of the airplane but he loved it. I did get him the earplugs that are said to help with the pressure in the cabin, but I was the one who needed them. We did a lot of pretend play involving planes for months before going. I set up his DVD in the plane and he was fine. The one thing that helped the most while at WDW was that we never went anywhere without our ear plugs. Even the most calm attractions could get loud for him. Good luck!