Very long rant...son with TBI

[NiniMorris]

Hi,

So glad this is available! I spent several hours last night reading posts, taking notes, and in general, feeling pretty good about our upcoming trip. Then, after I went to bed, my mind couldn't turn off. New questions and problems popped up. More fears appeared, and now I am just as scared as I was before I found this site.

My plans currently call for re-reading this the night before we leave... LOL

Seriously, here is my problem. My 6 year old foster son was injured in an automobile accident 3 years ago. He spent over a month in the hospital, between being in a coma and being in rehab. He suffers from TBI (traumatic brain injury). That is just a medical way of saying he had a closed head injury. Prior to the accident he was a bright, active 3 year old who was starting to teach himself how to read. Now he is a 2 year old emotionally, a 3 and a half year old intellectually, and has actually started growing again and is the size of a normal 5 year old. He has had to learn how to swallow, speak and walk all over again, he has almost no short term memory (but that is finally starting to get better!), can't stand sudden loud noises (unless HE is making them!), can't stand to be in crowds, has NO fear, feels NO pain, has violent meltdowns, and does not understand the meaning of patience! He has a tendancy to disappear, and when he does, he hides. He is a roller coaster junkie, and is excited that he is tall enough to ride the Dinosaur ride!

We last went to Disney 2 years ago. At that time he was still severly handicapped (in that he couldn't walk for more than a few minutes at a time) and we rented a stroller. His melt downs were not that bad then, so the only real problem came when we were waiting for Dumbo. There was a sign saying a 30 minute wait, so Dad took him to the potty to kill some of the time, and when he came back, all was fine. Except that the wait AFTER he came back was over an hour! He and I did not get to ride as he had a major meltdown and we left, while Dad and sister rode. Later, one of the CMs told us about the GAC. Even though we got one, we never actually used it. Using Fastpass was enough.

Fast forward to our trip in 2 weeks. He is now improved physically, but emotionally, the progress has been non-existant. We frequently have to restrain him during meltdowns to keep him from injuring himself or others. He is a very strong little boy! He is on medication that helps, but around 5 pm he crashes...hard!

When I read about some of the hardships and challenges of parents with autistic children, I know exactly what you are going through. Most of those symptoms are what we see daily. In fact his OT uses a lot of the same sensory training as she uses with her autistic patients.

Now my problem. We will probably get a stroller again, just in case. He probably won't want to get in it unless he wants to hide. We will use a harness, again, just in case. We will get the GAC, even though we probably will not use it much but it will be nice to know it is there. we will plan our day around his normal schedule. Being ready to head back to the resort around 5 to avoid a major crash. We are getting him ear phones to help with the noise, letting him decide when he wants to use them. We are using a touring plan to avoid longer lines, and will be having one character meal so he can get his fill of characters without waiting in lines. We will take his handheld video game to play with while we are in lines. His doctor is giving us extra meds for the car trip down (he cannot take the long drive). We are taking DVDs from home and his portable DVD player to use in the room as he needs it. The only thing I am worried about, is his meltdowns. They are MAJOR. before we started homeschooling, I was called to school at least 3 times a week. The teachers could not restrain him enough to keep him from injuring himself or them.

When people see me restrain him, well let's just say I have been reported more than once to DFACS. Our caseworker thinks it is funny! His therapists and doctors have showed me how to restrain him in a way that does not hurt him or me, but it does look pretty bad. I have to put him in a modified basket hold. I am concerned that I will get reported and our vacation could end on a really bad note! Any suggestions on how to prevent that? I'm used to strange looks. But I also know the restraint has to be done at the moment and not after we have removed ourselves from the 'public view'. If I wait until then, it becomes too much for me to handle, and a black eye or broken bone for Mommy isn't how we want to end our vacation either.

As I re-read the last paragraph, I think it really sounds terrible! It really isn't all that bad. we can probably get the melt downs to maybe once a day, with good planning on our part. I guess I'm just concerned with how to deal with other people. Probably not much different than the way I deal with them at home. I think it actually bothers my husband a lot more than me!

Sorry this was so long and such a rant, but I actually feel betternow. Putting it down in words has made it clear to me I have most of the process in place, and we are going to have a GREAT time1 (but if you hear of a mother getting arrested for 'child abuse at WDW" somewhere between the 23rd of Feb and 1st of March there is a good chance it is just me!!!!)

Nini Morris

 

[mechurchlady]

People get worried when they see a kid being manhandled or restrained. It is hard for a stranger to know at first glance that a child has a disability and is not the prodigy of lazy parents, abusive parents or parents who could not train a dog let alone a kid. Do not worry about them reporting you as there is no way to prevent them from doing so and nothing you can do when the kid melts down that you are not doing now.

My 82 year old mother has had meltdowns aka fits of rage, will not ask for something but instead hints "I wish I had a new dress", phobic at times, not good with crowds, and other stuff. It looks weird to have a 40 year old treating a 70 year old like a kid. It is hard being a care taker of a person with mental limitations. There are days I cry and days I want to break things. Your rant above in nothing new, been there.

The best thing to do is have the doctor's note stating the violence of the meltdowns and what needs to be done. A diagnosis is not helpful but stating what is needed and why mommy is hold the kid helps. As for 5 pm meltdowns forget about getting to the room at 5 pm. The stress, new stuff, and excercise will make the meltdown come much sooner so you will have to probably be prepared for an earlier time.

And stop worry about getting arresst or reported as based on all the kids I have seen in parks who were abused by parents who slapped, pushed, hit and yelled at. There are a lot of parent who are worse than a mom trying to control a kid meltingdown.

Lots of hugs and good wishes, plan the trip and roll with the punches.

 

[SueM in MN]

You sound like you have thought things thru quite well and made a lot of plans that should help you to have a good time.

I don't know if you saw this suggestion, but it might work well if he does have a meltdown. Some people have printed up some small business cards that one member of their party could hand out while mom (or dad) dealt with the meltdown. The cards that some people made just had a few basic facts and some things that would be helpful. You might find something that would be helpful from the Brain Injury Association; they have some fact sheets. you might also find something on an autism website.

 

[ireland_nicole]

O.K. take a deep breath, you're doing fine. You sound a lot like me with my trip prep, and I think you've covered as many bases as you can. I agree a Drs note re: his Dx, need for restraint, etc. isn't a bad idea, but I'm sure it won't be needed. Be prepard that even if you are staying on property, it can take an hour to get back to your room, so plan to leave by around 3. I found that the sand at the beach of the hotel (We last stayed at CBR) and the pool were both calming. Re: the parks, you'd be amazed at how little people notice what's going on around them, esp if your back is to them. Keep an eye out, there's almost always a quiet place somewhere close by. Try to be extra vigilant before your trip, can you see a meltdown coming? I thought I couldn't, but was amazed when I started really recording the meltdowns, I could see a very quick but consistent progression. That allowed me to slow the progression down (sometimes). Above all, relax as much as you can and enjoy this time with your son. You will never have this trip again. Other times will be different. Appreciate what you can do and enjoy together.HIH; My prayers are with you, You're gonna do great!
Nicole

 

[OneLittleSpark]

It sounds like you've really got thing planned out well! Don't panic, I'm sure things will work out fine! Here are my suggestions (in no particular order):

Keep him cool & well hydrated. An over-heated, dehydrated kid is going to be a lot more likely to meltdown.

Use the stroller and make sure to get the "stroller as wheelchair" stamp on your GAC, so you can take it into lines.

Make a list of everyone's 'top 10' attractions before you leave. You probably won't be able to do everything in every park, but this way you can make sure no-one comes home disappointed.

As Nicole said, you'll probably want to leave a while before 5. That way you can make sure you're back by the time he crashes. It wouldn't be much fun to deal with a meltdown on the bus

Find things around the resort that might calm him. If he likes deep-pressure, this might be the hot-tub or a hammock (these are only at some resorts). Where are you staying, and what helps him?

Remember, it's your holiday too. Relax, have fun, and take the time to enjoy your little one's smiles, rather than just waiting for the next meltdown. Yes, you probably will have some meltdowns, but you know how to deal with them, so don't sweat it: you can cope! Instead, look forward to allthe magical moments!

Have a wonderful trip, and let us know how it goes!

 

[MyFishRuleWJG]

I wanted to write this to share a little advice for the parent with the son with TBI. When my daughter does need to be restrained I make sure to say to her I am just holding you until you are calm. Words like that help those surrounding us to 1) mind their own business 2) see that I'm a professional (although I wish I wasn't). I also try to keep my daughter facing away from whatever set her off in the first place. I'm wondering though if your son has a disability why you aren't taking advantage of the special pass for those with disabilities? She has meltdowns when things don't go to way she expects or if she doesn't get something that she wants. I only had her meltdown once outside, typically it's something that happens at home. I've never had the courage to restrain her in public. I wanted to say that I so look up to you for doing that! We have done testing for our daughter that has shown her to have very low "emotional regulation." It seems to get worse in the winter and better in the summer. We've signed her up for ice skating, gymnastics and we go swimming as a family. I've found that has helped her someone to hold herself together better when disappointed.

I wish you a wonderful vacatation - you all so deserve it!
Wendy

 

[Schmeck]

One thing about the ice skating - if you think that there is any chance your daughter would have a meltdown on the ice, or in the rink lobby, do not take her skating. Ice skates are dangerous, and can deliver a serious wound to anyone that just happens to be near. Also, unless you are prepared to go out on the ice with her (in skates) would she be able to control herself? I've seen some very nasty gashes from skate blades, as they are really double edged knives screwed onto boots.

 

[NiniMorris]

Thanks for the encouragement and suggestions. I actually had thought about the cards, but my hubby isn't comfortable with that idea. He is a policeman, and he says it seems a bit like a bad guy passing out notes to all the customers before he robs a bank!

We are staying at CBR. Originally thought about the family suites at Music, but the CBR fit our budget better and seems to be a bit quiter. And we are taking our car for transportation. Hubby wouldn't go if he couldn't drive! Doesn't even let me drive him around. (not that he is a control freak, just works way too many accidents to trust anyone else's driving.)

Since his crash won't happen until after the meds wear off, we really are pretty safe waiting until around 5 to head back to the room. We have some tricks to use in the car once it starts. And the crash is preceeded with a crying jag, so even if it starts early, we will still have time to make it to the car. And we also have a handicap placard for our car; both for him and for me. I have psoriatic arthritis and sometimes can't walk for long distances. (yes, I am keeping an eye on my own condition, I know my limits and will have my meds and braces if I need them. Right now I am in a remission of sorts, so feel pretty confident about my own health. we generally go pretty slow where Damien is concerned, so I'm not expecting any problems, but am prepared if they happen)

I do have one other question though. Damien's 7 year old sister sometime's misses out on the attention. We bend over backwards to deal with Damien, and sometimes forget about Brianna. She is very mature for her age and is a great little helper where her brother is concerned. I am a little concerned about her during the trip, although we generally have me leave with Damien (I can control him better) and Dad stays to ride with Brianna if there are any problems. I just want to make sure we plan some things that she will love so that she isn't feeling left out.

Any suggestions? I'm thinking along the lines of letting her pick out one activity each day just for her. Damien can have some time running around in a play area while she gets her one thing 'just for her'.

Thanks for the support and ideas!

Nini Morris
Mom to 5!

 

[OneLittleSpark]

CBR is a lovely resort; lots of space and a nice 'open' feel to the place. If he gets too worked up, or feels 'trapped', when he's near meltdown in the room, there are lots of spaces for him to burn off some energy, or calm down (I don't know if that would work for you guys or not). They have lovely big hammocks on the beaches, which could provide some deep pressure and a 'safe place'.

How many of you are going? Is it just the 4 of you, or are there more?

As for your daughter, I think some 1-on-1 time would be a fabulous idea! If she's a 'girly girl' the Bippity Boppity Boutique might be her thing. Also, it sounds like she spends more time with her father than you (correct me if I'm wrong). Might you be able to get some mother-daughter time arranged? Maybe after you've gone back to the hotel for your son's crash, you girls could go out in the evening, if your hubby would be OK for a bit. If your hubby wouldn't be OK being left for a whole evening, you could do your girly time for a bit during the day, then he could go with her to the evening stuff. The fireworks and parades are really good, if you can get to go see them, but I understand your son may not be good with them, especially as his meds would have worn off by then.

One thing to be aware of, though you may well know this from the last trip, it takes a long time to get from MK to the car park, even if you use the HA parking, so be prepared to leave a little while before his meds wear off. Also, be aware that the 3 o'clock parade (which is at 3, by the way ) can block up the streets for at least an hour, so time your exit around that.

Make sure you take the phone numbers of a few ECV rental companies, just in case you need one for yourself (see the FAQ thread). One thing that definitely won't make the holiday more fun, is if poor mum is exhausted and in agony! Look after yourself, as well as your little ones!

Hope you guys have a great trip!

 

[Taratink]

It sounds like you have got everything figured out and you are getting good advise. I wish you well and send you my support. I hope you have a magical trip!

 

[SandrainNC]

I think carrying something from a doctor or about TBI is a good idea just in case someone were to alert the authorities. My son (who is from Korea) has mongolian spots. I carry paperwork with me because they look like bruises. A few people on some of my adoption boards have had people call the authorities on them. One person while in Walmart. A customer allerted staff and they called the police. They had their child temporarily taken away because of the spots until they could be explained. So now I am paranoid and carry a description of mongolian spots with color pictures plus our paperwork from the adoption agency that describes him having them. I am going to have to carry these papers to the water parks for sure because they really do look like bruises on his arms and back (his little behind too but nobody sees that).

Sandra

 

[SueM in MN]

I wanted to write this to share a little advice for the parent with the son with TBI. When my daughter does need to be restrained I make sure to say to her I am just holding you until you are calm. Words like that help those surrounding us to 1) mind their own business 2) see that I'm a professional (although I wish I wasn't). I also try to keep my daughter facing away from whatever set her off in the first place.

good suggestions

I'm wondering though if your son has a disability why you aren't taking advantage of the special pass for those with disabilities?

I just wanted to point out that there is not a 'special pass for those with disabilities'. WDW does have a Guest Assistance Card, which is kind of just what it sounds like, a Card that tells the Cast Members what sort of Assistance is needed by a Guest because of their disability.
It is not a pass (meaning it is not meant to give special access) and it is not given just because someone has a disability. Many people with disabilities have no needs for assistance and would not need a Guest Assistance Card (GAC).
There is a section of information about GACs in the disABILITIES FAQs thread if anyone wants more information.

 

[SmallWorld71]

You asked for suggestions for your daughter Brianna. Have you asked her what she most wants to do on the trip? I always ask my kids what the most important things are for them and make sure we schedule that in. That way everyone feels as though their needs are being met. It's usuallly something pretty simple. For example, on our last trip my DD wanted to meet Minnie, Cinderella, Piglet and ride the Barnstormer. My younger son wanted to try EE, ToT, eat at SciFi and get as many autographs as possible. Asking before you go, can definitely avoid hurt feelings later. I hope you have a magical trip.

 

[swimlib]

I applaud you for having the foresight that a restraint may be necessary at some point. That thinking ahead alone should help ward off the need for it, since you will be looking for the triggers.

For your daughter, if you want to do something with her, I think something like a mommy-daughter getting nails done (which could be done with dad and son at resort taking it easy). The BBB is great if she is a girlie girl, but if not, there are pirate cruises for kids as well. I think the best option is for you to sit down with her and ask her what rides she really wants to ride with just you. Even those couple minutes together while dad and brother are in another vehicle can be the attention she wants.

When we used to go, my mom would always let me choose a few rides that the 2 of us rode together, whatever I wanted. Now, she wishes she hadn't agreed to that when I took her on RnRC! But overall, the rides I always chose were quite, involved a nice slow progression, and let us just look at things together with attention just on me. Haunted Mansion, The Seas with Nemo, spaceship Earth are all good options. Spaceship earth is especially good since you can be in the same car but different rows than brother and dad.

I hope this helps!

 

[mamacate]

I just wanted to say that my son's issues are similar and we had two major meltdown incidents in the parks where I had to hold him while he raged (this was last year; he had just turned five). I was completely calm (as is needed to hold a raging child) and would make a sort of "poor guy" face to people who looked at us, like you would if a two-year-old was tantrumming--the lower lip jutted out in a sort of "awwww" face. Most people responded with a sympathetic face or look. This happened in very public places--by the Tomorrowland Noodle Station and a the FW entrance to Epcot. I was pleasantly surprised that despite there being a lot of people around, we were able to find a relatively quiet corners in both places and just waited out the storm (I can't move him far without getting hurt--we had hoped to get to first aid if it happened, but in reality that was not in the cards). I had all sorts of scary scenarios in mind when we were planning our trip (many of which were assuaged by folks here), but while the meltdowns did happen, riding them out in the park wasn't as scary as I imagined.

Here's hoping for the best, and good thoughts for a wonderful trip!

 

[cathy_s]

My DD14 (Downs) can become overwhelmed at times in the parks and has been known to have her own meltdowns. We don't have to physically restrain her but we do have to wait her out until she calms herself. As you know, some days that's harder than others!

Our best solution is to break up the day. Someone, DH or me leaves with DD14 around lunch and DD10 either chooses to head to the hotel or stay in the park. Whoever stays with her then becomes commando parent and gets lots done in a few hours! Later in the afternoon/evening DD14 usually is ready to return to the park. I realize that THIS particular solution isn't going to fit your situation because you can last through 5pm.

Another thing we do is set very minimal plans for the day. We decide the top one or two "must do" things for each person and work those into the day. This way DD10 is not lost in our adjustments for her sister. She carries just as much weight as her sister in her wants for the day.

DD14 is quite happy to stay in the room for some quiet time while DD10 is in the park or at the pool or shops.

Just know that if you miss something because of a bad day you now have an excuse to plan another trip!

Hope you have a great time

 

[mickey&minniealways]

I don't know how much help I can be but If you are worried about being reported yes the note from the doctor might help. What about a letter from the case worker and haveing it notorized by a notory public. This can be done at almost any bank. If you have to deal with athorities or security it can help. My two special children didn't have real meltdowns but I know of thers who have kids that did and this worked for them.

You also mentioned that he sometimes gets away and hides. Mine can be impulsive at times so this has happened to us. I am into scrapbooking. The oriental trading company scrapbook catalog has some luggage tags you can purchas. A pacage of 6 for 3.95. You can let him pick out a decorative paper and a couple of sticers to go on it, maybe his favorite disney character. Put his pertinent info on it. That way if he does get away they know where to return him. The luggage tag can be tied to his belt loops. He is more likely to keep it on because he helped make it and has ownership to it. My kids wouldn't wear the wrist ID but they liked this. They would tell anyone who would listen that they made them and what they were for. Good luck. and make sure to have fun.

 

[lucigo]

I have a 4yo son with autism and can relate to your story as we have had many a meltdown. Don't be afraid to use the GAC card! If I had a NT child who could wait for an hour in a line and could comprehend that waiting rewarded you with something fun, I would be more than happy to do that, but the sad truth is he really didn't get it at all. The rides themselves caused enough anxiety without adding an hour of crawling around on the dirty ground (which is what he would have wanted to do) or me having to hold him the whole time (which I did enough of anyway). I honestly expected them to ask me at each ride what his issue is, because he LOOKS like a normal kid until you try to talk to him. But everyone was extremely nice. We would walk up to the ride, show them the card and ask, where do we need to go with this? And in each instance we had an alternative to the lines. At the shows we were allowed to go in first so that we could pick our seats (by the door in case we had to make a quick exit). I did not feel like I was taking advantage of the card in the least, because honestly we couldn't have even been there without it. One line and we would have been done and ready to go sit by the pool, it would have been too exhausting.

When they find a cure for autism I will be HAPPY to wait in line again!

 

[NiniMorris]

Well, we just got back form our weeklong Disney trip. (I'm still unpacking!)

All in all it was a fantastic trip. We ended up using our GAC more than I thought. Since there was relatively low crowd levels, we were able to go on most attractions using the fast pass line, and had a relatively low or no wait. We only had to wait to see Mickey, and by then my son decided he didn't want his picture taken after all! (mini meltdown).

We only had one major meltdown in the park. It was on our first visit to Magic Kingdom. We were leaving the park, and hy hubby wanted to check out the store display that caught his eye. Damien would have NONE of that and I spent the next 45 minutesd sitting in front of the store on the ground holding Damien trying to get him to calm down. Strangly, NO ONE EVEN NOTICED! I'm not sure if that is a good thing or not! My husband said it was because it was obvious I was trying to calm him down, but I am concerned that if I was abusing him or abducting him, that no one would have responded...I guess I just worry too much!

Again, I just wanted to thank everyone for their suggestions and support for our trip. And he did not try to escape the hotel room, but everytime we went shopping he tried to disappear out to find the playground. I guess he is not a shopper... takes after his Dad!

Nini Morris

 

[Cheshire Figment]

Welcome back and glad you all had a good time.

And don't worry, you were probably noticed and being watched. Disney has lots of plainclothes security in all of the parks. Normally they do not interfere, but will if needed, and they are more likely to ask operations to send over a uniformed Security Officer so they don't break cover.