View Full Version : Safety concern for DS9 with autism
03-30-2008, 11:08 AM
I know this might seem like a strange question.....but here goes...
Our DS9 has autism and has no concept of fear/danger. This is our first time taking him to WDW (which we are ecstatic about!) but we also have a real fear about 'losing' him in the crowd as he tends to wander/run sometimes with no idea how dangerous it can be :bolt:. I already have plans in place for id tags, taking pic in am, etc. But we are seriously considering using a tether of some sort to make sure we don't get separated. He has recently started not liking to hold our hand but wants to hold our arm instead..which is fine for daily life but not in the parks. So we were thinking of something that would attach to his belt loop (he wont tolerate anything that he can see like on his wrist) and then attach to our belt loop or something to make it hands free for all of us. But I've not been successful in searching online for anything. Also, I believe we need to make the 'rope' part of it lightweight (well all of it really), and I'm not sure how long to make it. At one time we couldnt go walking on our property (we live pretty far back in the woods) without him running and I tried using one of those retractable leashes but it wasnt very friendly because it would get too long and drag, and holding it in one's hand is a strain. I can't imagine doing that for 8 days in WDW. (I know this all sounds terrible.....but you have to understand how terrified I am of losing him :paranoid:). I know they have harnesses for toddlers, but they are not big enough, and he wouldnt tolerate an animal on his back anyway. :monkey:
Does anyone have any experience with anything like this or any ideas for us? We are so totally excited about taking our special guy with us and showing him the world...he keeps talking about "Ditty Our World" and "Mickey Moush".....but I also want to make sure he is safe and we can do it in a way that is pleasant and comfortable for all of us. Any suggestions or experiences would be so helpful!
03-30-2008, 11:55 AM
Well I don't know if this would truely be practical, but could you give him a walky talky? So if, heaven forbid, you lose site of him for a moment you can just radio for him? Would that be possible?
With the belt loop thing, I'd just worry that he would get excited and run quickly enough to break the belt loop!
03-30-2008, 12:01 PM
How does he deal with crowds at the mall, or other places?
He may want to stay closer to you in unfamiliar surroundings. Would he accept staying in a wheelchair or a large stroller?
03-30-2008, 02:06 PM
Well I don't know if this would truely be practical, but could you give him a walky talky?
Not practical, as he is non-verbal in that way. He'd probably put the walkie talkie down and go searching for something that is spinning...
How does he deal with crowds at the mall, or other places?
He may want to stay closer to you in unfamiliar surroundings.
Well, at the mall we are having to constantly hold his hand so he stays near us. Unfamiliarity isn't in his vocabulary...to him it's something new to explore for the most part.
Would he accept staying in a wheelchair or a large stroller?
I think he might be too big for a large stroller..not sure the sizes at WDW, but some pics I've seen...wouldnt work. And we certainly don't have one. We had thought about the wheelchair route....but don't really want to start out with it...he is perfectly capable of walking on his own (albeit at his very slow pace. :) )
I don't mean to shoot the ideas down...but trust me...I have thought and thought about this. And my husband is insistent that we do something. Maybe I will give that one assignment to hubby.....make a lightweight thingey mabob to keep him safe and with us! One assignment isn't bad for planning an entire vacation, is it? :mickey:
03-30-2008, 03:05 PM
Don't they have some kind of device out now (maybe a wristwatch type thing) where if the child wanders an alarm sounds? Maybe that would work. That way if he got lost you could find him quickly that way.
Hopefully crowds will be lower when you are going and it won't be wall to wall people everywhere.
Also, I'm sure you thought of this but you could put your cell numbers on his person somewhere so a CM could find you if he was lost.
Edit: I googled child safe alarms and the mypreciouskids website had a number of things that looked interesting. Sorry if you have already looked into this!
03-30-2008, 03:35 PM
a friend of ours has bells on her 7yr old daughters shoes... if she starts to wander off u can hear the bells lose the sound and as she gets closer to her...mom and dad can hear the bells jingle so they know which way to go. not sure how well it would work at disney
id be concerned with the belt loop thing if some one didnt see it and went running threw...the runner...your child or yourself could get hurt in the collision
good luck and have a wonderful vacation
03-30-2008, 03:48 PM
Our DS is going to be 8 in April. He has moderate cerebral palsy and is cognitively disabled.The CP doesn't slow him down one bit--he just works around it. Eventually he will tire out, but usually he's on the go and very impulsive. He won't hold my hand at all! He's also nonverbal, so he wouldn't even be able to ask for help or explain his situation if he got lost.
We ended up buying a Maclaren Major Special Needs stroller before our trip to WDW last year. I can't imagine what our trip would have been like without it! I believe it can accommodate someone who weighs up to 150 lbs., but I'm not sure of the height capability. My son is a little over 4 feet tall and he has plenty of room.
It was pricey--$400-- my insurance company covered it after our doctor wrote a leter of medical necessity explaining how it would keep him out of danger. Plus, it's WAY cheaper than a wheelchair!
My DH and I were conflicted about getting it--we thought it might make him seem more "disabled" in some way. My son actually loves the stroller! I think it gives him a feeling of security and control over his surroundings.
We use it alot now--it's foldable and relatively lightweight. We take it to the mall, the zoo, anywhere with long distances and lots of people!
I wish you the best in your search for something that works for your son and your family!
Poly in 2 days!
03-31-2008, 06:07 PM
Devising a belt loop harness sounds dangerous to me. Not only for those around you, but also for your son. If he were to get to the max length and still be moving, it could cause him to fall since it would be attached at only one point and at his waist. It could also allow him to roam further away from you than you'd like.
Personally, I think if you rented a double stroller, he'd be fine. We actually found the Christmas party to be super crowded in certain areas and got fairly worried about losing our older kids so we grabbed a double stroller for an hour or so (they were free for some reason). My DD was 9 and over 55", and she sat in it with her sister who just turned 5. Even if your son is quite tall, I think he'd be OK in a double by himself. My concern there would be if he would jump out while you are pushing it. That could be dangerous. Would he stay put if he saw something fascinating?
Good luck. It sounds like quite a dilemma. I know you'll have a fantastic time, though!
03-31-2008, 08:59 PM
I'm not loaded with advice on this but if he's anything like my nephew was...the boy wouldn't tolerate anything on his "wrist" or in a dynamic setting like DisneyWorld he wouldn't contain himself to a stroller or wheelchair. You could never "predict" when the "urge" to run was going to strike and sometimes it was hard to catch him. As he's grown quite a bit in the last couple of years and with help of certian medications he seems to have gotten a LOT better about this...
I've seen them in stores and you can find them all over the internet but they have a Child Locator device (I think one is IONKids or something like that). The device is small and can be pinned onto clothing or carried in a pocket. They have different ranges varying between 350-1000 ft. They sort of work like a little tracking device (batman style). You hold the tracker. I haven't tried one myself but they sound cool. There's no comparison but I have a cherished kitty that loves to escape outside...for a couple of years I tried all sorts of stuff to try and figure out where he went but...of course this was a little out of my price range for a cat that frequently loses his collar (I think it was about $150-200)
I know on a "simpler" level places like Beds, Baths and Beyond or Linens and Things, Sharper Image (stores we have here that I know are nationwide)...have "key" locators that can be used for up to about 40 feet to locate Keys, Cell phones or any other device you attach to it.
For a "sprinter" you might consider one of the long range devices but...it's just an idea. Even though these location devices are a little much they may be something worth looking into. Just be careful to get the one for immediate "location" and not a not a "tracker" (you download GPS info later).
The nice thing is that there are a lot of open spaces where you'll be able to spot him and the CM's are very helpful and quick to help you out. Take plenty of pictures of him first thing in the morning to help with descriptions.
P.S. I googled something called Loc8or. Rather cool too. Found it a little annoying that there's some proposals out there trying to make this sort of stuff including GPS trackers illegal because of privacy issues. SIGH.
04-01-2008, 09:12 AM
When my kids were little and I had 3 under 5 I used to tie a balloon on the belt loop so I could follow the balloon in the crowd if he got away. (Kind of like a flag on the bike) Use clothing that is easy to spot too.
I agree that a cord can be very dangerous and can be a tripping factor. If some other child runs across everyone could hit the floor, or an elderly person with poor vision... any number of factors in a crowd. Having a stroller/wc helps of course b/c we could tie the balloon on the stroller when we went into a ride. I'm sure it could be a real pain to bring a balloon on a ride. But they are invaluable in a large crowd or shopping.
04-06-2008, 01:07 AM
I actually think Disney security CM's might have an issue with an overly long "rope" type device attaching two people. The safety issues with something like that in a hugely crowded place like WDW could be numerous. It sounds iffy to me, even just for a walk around the block.
Will you have a backpack? Can you attach a strap to the backpack with a handle on it for him to hold? I'm thinking along the lines of a small luggage strap that you can hook to the backpack and he can hold onto. Also, I'm wondering why it wouldn't be practical for him to hold your arm? Not much different than hand holding, and it will keep him close to you and it's something he's comfortable with. Will there be 2 adults to keep an eye on him? If so, take turns being the "designated" watcher of him. Make absolutely certain one of you is designated to watch him and make sure each person knows whose turn it is. Be very careful that you don't both get distracted and then have to play the "I thought you were watching him" game. That is how kids get "lost" at WDW. The parents get distracted, and the child wanders off. In your case, you know he might run, and chances are, you'll be hyper-vigilant about it. The good thing is, you will usually be able to catch him quickly. The only times I'd actually worry would be in mob type crowds, like after fireworks on Main Street and during exiting theatre attractions. Just hang back and wait before leaving, and let the crowds leave before you, or leave ahead of them. A lot of crowd avoidance can be done with the proper timing.
I would look into the Maclaren special needs strollers as well. I have read a lot of positive reviews of them. Buy it well in advance of your trip, so your son can get used to it.
I can completely understand your fear. I have a 3 year old (almost 4) who is autistic, and although he is high functioning, he is a "wanderer". He doesn't bolt, which is good, but I can see that in our future. We go to Disneyland very often, and we use a stroller and only let him out to go on a ride or to play in a contained dedicated play area. If we got to the point where he was 9 or 10 and we were having a problem with him running away, we'd not hesitate at ALL to get a larger special needs stroller for situations like theme parks.
Although your child is capable of walking, remember how HUGE WDW is. The "average" person walks 5-7 MILES per day at WDW. That's a lot for anyone. Your son might struggle with that amount of walking plus all the stimulation of being in a new and exciting place. He might breakdown (behaviorally) sooner than you want, and I think having a stroller will bring you ALL some relief. You can relax knowing he's safe and he can have a place to chill out and rest. I think you will all benefit. He's still a kid. When I was 9 and my parents took me to WDW, I would have killed for a stroller to ride in...
04-06-2008, 01:48 PM
Thanks to all of you for all the different suggestons. :thanks:
I think I am definitely going to look into renting a McLaren stroller while we are on our trip. Not sure how my husband will feel about not having a 'lead' on DS9, but I am concerned with the other safety issues as well. There will be three adults (DH, DD21 and myself), so we can take turns being the 'official guide' for our little guy. That way no one will get worn out or frustrated.
I feel safer having my hands on him, not relying on him to hold onto my backpack....that spontaneous thing :) .
Just wanted to say thanks again for all the help!
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