Older child OCD, Tourette's, ADHD and a recent knee surgery

[Kindermouse]

So, first off, I have have had many trips to DL with my son who had OCD, Touretts, and ADHD and we have found lots of ways to have a great experience. That being said we haven't been in about 5 years since I had a crummy job for a while. We saved up so we could go next weekend, for his 12th birthday. We have been looking forward to it. Talking about it, making plans to make it go well. Then 2 weeks ago (a little over 3 weeks before our trip) he fell doing flips on a trampoline and broke his front teeth off in his knee.

The teeth are fixed, the knee needed a small surgery since his teeth went down to the tendon and he is on crutches. Also some of his meds for anxiety don't mix with pain meds so he is off his OCD meds but still taking his ADHD ones.

The injury means he'll be in wheel chair for the trip obviously but the real issue is that the pain and stress have caused his neuro issues to be in a waxing phase. The OCD is not good, he is really fixating and being ridged about following through with his compulsions. He doesn't do compulsive hand washing but rather worries about crime, and accidents and he has to do many things the "prevent them" that would make it hard to be stuck in one place for long. He also has either a compulsion or a tic that makes him wipe his knuckles under his nose to a point that he wipes away the skin and it cracks and bleeds. The pain and irritation makes him do it more. Then he feels the need to tell everyone who "stares" at him that he is not picking his nose. He also becomes very fixed on the sounds other people make but I know he can bring his assortment of headphones and a device or two to deal with that. there are many others but these are the things that make me worried about our trip (winking and blinking and grunting and others shouldn't effect our trip).

When he was littler I could just put him in a stroller with one of those rain covers over it and give him a DVDs player and toys and voila, he had his own little quiet world but he is too big for that now. I'm really hoping that he will have so much fun that he will be distracted from his OCD to some extent.

We need this vacation to be great. We have waited a long time to get to go back to Disney, or have any vacation at all and it feels so important for it to be what we have been looking forward to. Also if I'm being honest, we have been struggling lately (puberty has made him so emotional and difficult to deal with) and we need a happy time when we can enjoy each other and not be stressed out. Any tips and tricks would be appreciated.

 

[gap2368]

hi and welcome to the DIS. I would get a wheel chair as there is a lot of walking at disney. you can make him a small caccon buy getting either a very small unrella or a light weight hooded and have him sit in the wheel chaired try to focus on a game or toy. you can also go to GR and try to explain his need while waiting in line and see what they say ( he might get a DAS card where he can do the majority of the wait out side the line, but there will be people around him who can stare and make him uncomftabel)

 

[DisneyOma]

Shouldn't he be off pain medication and back on OCD meds by next weekend? At age 12, he shouldn't be on anything too heavy duty to begin with, so perhaps check with his doctor and get him back on schedule for his OCD meds?

 

[gap2368]

Also if I'm being honest, we have been struggling lately (puberty has made him so emotional and difficult to deal with) and we need a happy time when we can enjoy each other and not be stressed out. Any tips and tricks would be appreciated.

I just reread your post puberty can have a lot to do with how he is doing, not to mention him hurting him self. I would really try and talk to his DR and see what they suggest I know most meds take a few weeks to really start to work and then you have to get the right one right dose so it maybe too late for this trip to really get things good. Also I understand that you want to have a great vacation and that you need to have time together but remember it will not be perfect things will and often do go wrong so when something happens do not let it ruin your vacation take a moment and relax and get a way ( if his OCD TS is bad often a little time in a quiet place is helpful or if his ADHD is bad a place to run and burn off extra energy ) you know your son the best and what he need disney can be extra stressful and for some kids with TS OCD this can make it worst kids will often take cues from the adults around then and if the adults get bent out of shape because something goes wrong the kids will pick up on this.

 

[Kindermouse]

Thank you all for your replies. Gap3268 I do have a problem with wanting things to be perfect when real life never can be. My go to idea is that if I just treat everything like work I can make it all go smoothly. Create a plan, consider what could go wrong with the plan, then replan or plan contingencies to over come those possibilities. I think that I should probably start with accepting that things will go not according to plan and how need to react when it does. Lord knows The only thing we all really can control is how we choose to react to things. He really does take cues from those around him.

our last trip was the best we ever had, we had things figured out and, everything just went our way. It was like the unicorn of vacations .

I might see if we can get a GAS to use as needed. If he can't take the wait we can wait elsewhere, maybe in a break area and come back refreshed. Or since we are staying on property we could go to our room for a bit.

I was thinking of setting a schedule that is very structured since he likes that and it helps him on a usual day but then if something unexpected happened he wouldn't be able to let go of the plan. Like if we said after lunch we will go on thunder mountain railroad then haunted mansion. Well if thunder mountain was closed he might not be able to go onto the next thing. He would have to do things in order even if it meant we sat and waited for hours for it to reopen. Maybe we should have a multi option plan like will go on either a or b depending on wait times?

Would you all advise letting him sort of run the show? With his age and his personal tendency to want to do so daily I usually watch this and make sure he knows that he can't be the boss or be in control of what others say and do. But it might help us get through with less issues if he is guiding the way and setting the pace. It's just the two of us so there is no one else's feeling to have to consider.

 

[OurBigTrip]

As it's been a while since you went, I just want to make sure that you realize that the GAC you may have used on your last trip has been replaced with the DAS, which works very differently. If you are able to obtain one, you will get a return time based on the length of the standby line minus 10 minutes, and then you will return to the FP line at that time.

 

[gap2368]

I only have my phone but wanted to replay

1 rides can be down all day so if you want to have an all day ride to ride plan have 2 options or just do we will go to MK and try to do these rides.

It can take over an hour to get to the park to the hotel to rest ( you are going to disneyWORLD) so you may not be able to go back that Easey ( if he need to rest have a quiet place first aid would work) as fair as letting him chose you could have a plane on what park to go to on what day let him help pick FP and time and the let him pick something today and then you pick something this way he is not used to getting every thing he wants when he wants it. I would take a break for lunch either site down or QS also before the parade can be a nice break while waiting for it

 

[mamabunny]

In addition to the new DAS system, please remember that there are security changes in place at all Park entrances now. With him so worried about preventing crime and accidents, consider if that might be a trigger point for him before he even gets in to the parks themselves. (or, maybe it would make him feel safer if he could talk to the security personnel?)

In addition to the idea of a lightweight hoodie that would come forward around his face to help create a low-sensory zone, would sunglasses help him feel better? By showing him in a mirror (or with you wearing the sunglasses) that it can give him some "cover" for his face & eyes?

Maybe you could sit together and discuss a plan for every day, and at the same time, set expectations for him: "If the line is too long for Pirates of the Caribbean, then we will go have a Dole Whip, and wait for the parade". Introduce your alternatives up front, and let him know that plans can be made, but still need to be flexible. Continue to enforce that idea of flexible planning (so he doesn't get stressed if things have to change) and then don't let him fully lead the trip - just adapt as you go to help accommodate his ability at that time, on that day.

 

[Nevada Jen]

You could also consider renting a liberty special needs stroller for him (or something similar) rather than a wheelchair. THat might give him the cocoon he needs and will be way easier to push.

 

[Kindermouse]

Is a

You could also consider renting a liberty special needs stroller for him (or something similar) rather than a wheelchair. THat might give him the cocoon he needs and will be way easier to push.

is a liberty stroller bigger? He is too big for a regular stroller.

Are the security personnel more present? If so I probably will need to mention it ahead of time and say that it doesn't mean that it more dangerous, just one way to sure more people are following the rules. I usually have to preface security people that way or he assumes that they are there because the place is thick with danger and crime.

 

[gap2368]

yes it is bigger I think up to 100 pounds

I would tell him that there will be disney security and they will want to look in bags and that they randomly pick people to go through a meter detector but not every one gets picket to do this. but bags will be checked.

here is a picture I just found of a disney security guard and a little guy when I just searched for an picture

https://s-media-cache-ak0.pinimg.com/originals/ed/01/f8/ed01f8e0cd791aee0f17a1ce6fbda158.jpg

 

[mamabunny]

Are the security personnel more present? If so I probably will need to mention it ahead of time and say that it doesn't mean that it more dangerous, just one way to sure more people are following the rules. I usually have to preface security people that way or he assumes that they are there because the place is thick with danger and crime.

We were just at the Parks in early January of this year. At all of the parks, you will still go through "bag check" as before, but now there are small security shelters set up just beyond the bag check area. At the time we were there, people were randomly selected to go through the metal detectors and/or be wanded. From what I have seen on other posts here on the DISBoards, as well as other WDW fan sites, the Security personnel are now Disney CM's. At the time we were there, they were outside contractors and wore what was obviously a security/police type of uniform. I do not have information on how the Disney Security CM's are dressed, or if they have increased the number and/or frequency of people being selected to be checked.

Do you have cards for him? I know that some parents who have a child with specific issues sometimes will print a business card size card that briefly explains the type of interaction to expect from the child, and what the card recipient can do (or not do) to insure a better interaction. Having a few of those in your pocket might help ease the way through airport security as well as Disney checkpoints. I actually made some to carry when I was taking care of my Mom who locked-in after a stroke and had multiple issues that mimicked dementia.

 

[gap2368]

I was just there end of February and all though I did not look for the other security people I did not notice then any more I only saw disney security so I would think by the time of your vacation it will all be disney and the second screening where you go through a meter detector looks like one of those tens you put of when tail gatting it is about a 10 foot by to foot with a meter dector.

 

[CoriM48]

My son has OCD and TS among other things and is about 90 lbs. We rented the Liberty Stroller and it was a great safe place for him and easy to push. My son's tics were actually really manageable at Disney as long as he could pull the stroller cover over him and tic away from other people's stares. That seemed to take some stress off him to know he had a safe and private place to go.

Someone on this board made us a picture map of each WDW park before we went. We have significant issues with rigid thinking and expectations, so for us, if we promised something next and it went down and we had to pivot plan, he would completely lose his mind. I memorized every walkway and every ride in the parks and he had the picture maps. If we ended up at an attraction and it was down or the line was too long, we would immediately get the map out and work through it with the pictures. It helped tremendously.

 

[lanejudy]

I believe this thread has the maps CoriM48 references:

http://www.disboards.com/threads/anyone-have-great-picture-only-park-maps.3461324/