Skipadeedoodaa
Earning My Ears
- Joined
- Jun 15, 2019
- Messages
- 45
My husband and preschooler are seriously talking about Disney World. The preschooler is the kind of creative, phantasmagoric, wonder and awe, dress up type that is stereotypical of being a Disney kid. It really is a shame the child hasn't been, but I have a lot of reservations about going. I thought I'd ask here (hello!) to get a realistic picture of what Disney World would or could look like for us from families similar to ours.
DH is talking about taking our camper to Fort Wilderness this Autumn. (Don't you have to plan a year out and call for reservations competitively? Or have I misunderstood?) For perspective, we went on a weeklong trip in it recently and basically had one day at the conference then we required one down day in the campground and we were not able to do a single thing on our "must/want/can see" list for the area outside the every-other-day activities we managed at the conference itself. Executive functioning and lack of sufficient sleep is a major issue on trips. Go to bed late, sleep poorly, get up and moving around 9-10 am in response, coordinate everything to get out by about 2 pm, by that point we need to clean up the disorganization that's occurred and start preparing for the next day, so we stay in, play at the campground, go to bed early, and we make it to the next day's activities.
When I took the older two by myself to Disneyland many years ago before the babies (using a stroller as wheelchair for the then-toddler-now-child), I was so grateful to have a great Californialand view and to to have a room that was front and center for the light show at night to not feel locked away because our pattern was basically about 3-4 hours in the park in the morning as our max, with one night out in addition in the week. And now that child has the same needs but in a body three times as big and we have two more with special needs.
I've heard so much about the parks being less friendly and more skeptical of disabilities now than ever and it seems like so. much. money. to risk being in my camper with the toddler while my family goes to Fort Wilderness activities, the preschooler excluded and melting down without me, or something like that as our experience of Disney World. I have heard of disability guides but the context I heard about them in was their scamming for the non-disabled so I have reservation there as well. I don't want to be mixed up in drama, I just want to figure out how a Disney trip could be feasible and what realistic expectations would be for us. I completely understand the process of asking for needed accommodations (not explaining medical labels), but I have no idea how these dynamics tend to be disabling in an environment in which we've never been but it is my previous experience that trying to describe one person's limitations is overwhelming to our general society which cannot at all understand or be allies for when it is 6 people. I'd be grateful if anyone could give me a realistic idea of what our trip could look like and what things could make or break such a trip for us.
Here is a break-down of us...
Mom: Ehlers-Danlos Syndrome. Disability placard (I know it doesn't matter to them, but am just communicating the level of need to you and mentioning in case it affects parking considerations). Moderately impacts hips, hands, and feet; significantly impacts shoulders and spine which makes holding the arm out at extension to control a scooter quickly cause numbness and pain, and leads to migraine. (Often can't wash hair or pass a cup of coffee.) Prominent dysautonomia (blood pressure, gut, and heart rate problems causing exhaustion and passing out). Mornings are slow, walking is fine, but walking and talking (like needed to manage and coordinate children with multiple disabilities), much less in humidity while weight-bearing (pushing a stroller, carrying a child or bag, etc) is moderately disabling at first and becomes completely incapacitating within a couple days.
We have many therapists and supports at home we don't have while traveling. Behavioral symptoms are usually less incapacitating while traveling because of the novelty of travel and singular focus, but pain and exhaustion are usually far worse. We use an inline double stroller with adjustable height bar and seat placement to allow me to use it as a walking aid when only having light bags or the toddler and it can be used as a chill out spot for the preschooler or child with Dad pushing when needed. (The child is getting too big to squeeze in. Are there alternatives for this?) I also try to pre-plan and/or pre-cook foods for travel to not have gut issues. When we went to Disneyland ages ago, I had water bottles and safe cereal and all that delivered and had a fridge put in the room and that went very well. I would love to find some sort of electronic wheelchair that doesn't require arm extension to navigate AND has a means of carrying the toddler with me (attachable side car or stroller or second seat kind of thing) if that exists.
Dad: Autism spectrum, the only significant impact of which is that all executive functioning and emotional management of the children is Mom's domain as Dad cannot see or respond to those needs.
Teen: Prominent anxiety that is mildly disabling when Mom can manage the emotions, but severely disabling to incapacitating when Mom cannot talk through, organize, and direct. (The art class at Disneyland being fast-paced led to a panic attack years ago, to give a gauge.) That means the teen is using all the spoons to self-regulate so cannot offer any meaningful support for siblings. Also, hard of hearing and needs to be able to see closed captioning, supertitles, or faces. And MCAS with multiple food and environmental allergies.
Child: Significant autism, globally impaired. Chatty, social, looks like a model. Loves rollercoasters. Cannot regulate emotions in response to expectations or disappointments which worsens when tired, excited, or bored, and causes thrashing meltdowns that can involve hitting, kicking, throwing, etc. Sensory-seeking, especially when bored (like when in a long line), which is a very predictable place for behavioral symptoms. Many neurological implications including elopement, bladder (urgency and frequency causing us to have to abandon whatever we're doing and run often just 10 minutes after a last bathroom stop), discoordination and poor tone (wears AFOs), stuttering, challenged executive functioning which makes for difficulty in morning and evening routines (getting dressed, etc) and in having realistic expectations, and so on. Modified diet. This kid is super competent until totally not so it is difficult to believe the level of need in the first 5 minutes but over a day it is very obvious to anyone that it is an all-encompassing level of need.
Preschooler: Wants to dress up and have conversations with the princes and princesses, especially Elsa. Has Tourette Syndrome, making for a child in perpetual speech and motion with taboo words/phrases, including punching and kicking tics which are moderately disabling (needs space and understanding). Tics increase when bored, tired, etc and decrease when focused and calm. Insect anaphylaxis and severe MCAS with dietary and cholinergic triggers to heat, exercise, activity, pressure, friction, strong emotions, etc causing allergic reactions in a sensitive child who has sobbing meltdowns and bouncing off the walls excitement, needing lots of physical and emotional regulation support.
Toddler: Global developmental delay, rigid repetitions, mostly non-verbal, poor tone, pretty chill.
Edited to add a skipped word.
DH is talking about taking our camper to Fort Wilderness this Autumn. (Don't you have to plan a year out and call for reservations competitively? Or have I misunderstood?) For perspective, we went on a weeklong trip in it recently and basically had one day at the conference then we required one down day in the campground and we were not able to do a single thing on our "must/want/can see" list for the area outside the every-other-day activities we managed at the conference itself. Executive functioning and lack of sufficient sleep is a major issue on trips. Go to bed late, sleep poorly, get up and moving around 9-10 am in response, coordinate everything to get out by about 2 pm, by that point we need to clean up the disorganization that's occurred and start preparing for the next day, so we stay in, play at the campground, go to bed early, and we make it to the next day's activities.
When I took the older two by myself to Disneyland many years ago before the babies (using a stroller as wheelchair for the then-toddler-now-child), I was so grateful to have a great Californialand view and to to have a room that was front and center for the light show at night to not feel locked away because our pattern was basically about 3-4 hours in the park in the morning as our max, with one night out in addition in the week. And now that child has the same needs but in a body three times as big and we have two more with special needs.
I've heard so much about the parks being less friendly and more skeptical of disabilities now than ever and it seems like so. much. money. to risk being in my camper with the toddler while my family goes to Fort Wilderness activities, the preschooler excluded and melting down without me, or something like that as our experience of Disney World. I have heard of disability guides but the context I heard about them in was their scamming for the non-disabled so I have reservation there as well. I don't want to be mixed up in drama, I just want to figure out how a Disney trip could be feasible and what realistic expectations would be for us. I completely understand the process of asking for needed accommodations (not explaining medical labels), but I have no idea how these dynamics tend to be disabling in an environment in which we've never been but it is my previous experience that trying to describe one person's limitations is overwhelming to our general society which cannot at all understand or be allies for when it is 6 people. I'd be grateful if anyone could give me a realistic idea of what our trip could look like and what things could make or break such a trip for us.
Here is a break-down of us...
Mom: Ehlers-Danlos Syndrome. Disability placard (I know it doesn't matter to them, but am just communicating the level of need to you and mentioning in case it affects parking considerations). Moderately impacts hips, hands, and feet; significantly impacts shoulders and spine which makes holding the arm out at extension to control a scooter quickly cause numbness and pain, and leads to migraine. (Often can't wash hair or pass a cup of coffee.) Prominent dysautonomia (blood pressure, gut, and heart rate problems causing exhaustion and passing out). Mornings are slow, walking is fine, but walking and talking (like needed to manage and coordinate children with multiple disabilities), much less in humidity while weight-bearing (pushing a stroller, carrying a child or bag, etc) is moderately disabling at first and becomes completely incapacitating within a couple days.
We have many therapists and supports at home we don't have while traveling. Behavioral symptoms are usually less incapacitating while traveling because of the novelty of travel and singular focus, but pain and exhaustion are usually far worse. We use an inline double stroller with adjustable height bar and seat placement to allow me to use it as a walking aid when only having light bags or the toddler and it can be used as a chill out spot for the preschooler or child with Dad pushing when needed. (The child is getting too big to squeeze in. Are there alternatives for this?) I also try to pre-plan and/or pre-cook foods for travel to not have gut issues. When we went to Disneyland ages ago, I had water bottles and safe cereal and all that delivered and had a fridge put in the room and that went very well. I would love to find some sort of electronic wheelchair that doesn't require arm extension to navigate AND has a means of carrying the toddler with me (attachable side car or stroller or second seat kind of thing) if that exists.
Dad: Autism spectrum, the only significant impact of which is that all executive functioning and emotional management of the children is Mom's domain as Dad cannot see or respond to those needs.
Teen: Prominent anxiety that is mildly disabling when Mom can manage the emotions, but severely disabling to incapacitating when Mom cannot talk through, organize, and direct. (The art class at Disneyland being fast-paced led to a panic attack years ago, to give a gauge.) That means the teen is using all the spoons to self-regulate so cannot offer any meaningful support for siblings. Also, hard of hearing and needs to be able to see closed captioning, supertitles, or faces. And MCAS with multiple food and environmental allergies.
Child: Significant autism, globally impaired. Chatty, social, looks like a model. Loves rollercoasters. Cannot regulate emotions in response to expectations or disappointments which worsens when tired, excited, or bored, and causes thrashing meltdowns that can involve hitting, kicking, throwing, etc. Sensory-seeking, especially when bored (like when in a long line), which is a very predictable place for behavioral symptoms. Many neurological implications including elopement, bladder (urgency and frequency causing us to have to abandon whatever we're doing and run often just 10 minutes after a last bathroom stop), discoordination and poor tone (wears AFOs), stuttering, challenged executive functioning which makes for difficulty in morning and evening routines (getting dressed, etc) and in having realistic expectations, and so on. Modified diet. This kid is super competent until totally not so it is difficult to believe the level of need in the first 5 minutes but over a day it is very obvious to anyone that it is an all-encompassing level of need.
Preschooler: Wants to dress up and have conversations with the princes and princesses, especially Elsa. Has Tourette Syndrome, making for a child in perpetual speech and motion with taboo words/phrases, including punching and kicking tics which are moderately disabling (needs space and understanding). Tics increase when bored, tired, etc and decrease when focused and calm. Insect anaphylaxis and severe MCAS with dietary and cholinergic triggers to heat, exercise, activity, pressure, friction, strong emotions, etc causing allergic reactions in a sensitive child who has sobbing meltdowns and bouncing off the walls excitement, needing lots of physical and emotional regulation support.
Toddler: Global developmental delay, rigid repetitions, mostly non-verbal, poor tone, pretty chill.
Edited to add a skipped word.
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The "worst" thing you can say about Fort Wilderness is that you have to take either 2 buses, or a bus and a boat, to get anywhere outside the Fort. But it is so beautiful and tranquil, and the people are all so friendly that you don't care - I speak from experience 
