Explosive Tantrums

[KAA1972]

I purchased the Peltor Kids earmuffs based on recommendations I read here on the Dis. They were very comfortable, and DD enjoyed wearing them. Below is a link to the pink ones, but they come in other colors.

http://www.amazon.com/Peltor-90553-...ref=sr_1_1?ie=UTF8&s=hi&qid=1289831366&sr=8-1

I second the recommendation for these headphones. Our DD is just sensitive to noise and these have helped her tremendously. I bought them two months before our trip and just put them on the coffee table with her toys and she tried them out on her own. I felt this would be better than forcing them on her head at the parks. She loves them!

 

[blondietink]

As a mom with 2 disabled children, and who has worked for 11 years in the field of disabilities, I am always amazed and dumbfounded by doctors who say they aren't sure what a child has, but then go and prescribe medications that are not approved for children! The medical field has no understanding how many of the medications your son has been prescribed work for children, what the amount of medication should be prescribed, and what potential damage they might cause in children that could be temporary or permanent. The side effects of medications can be worse then being off medications. Many medications linger in the body for a long time after stopping them. A good Occupational Therapist who has experience in dealing with children with disabilities would be helpful in addressing his sensory problems. A good behavior specialist who has experience in dealing with children with a disability would also be helpful in finding out what is causing the behavior by doing a good functional behavioral analysis and making recommendations from there. Just MHO.

Personally I would be very reluctant to take your son to WDW considering the explosive tantrums and the fact you will be alone with him. If he has a tantrum which I am sure can be very bad, and a CM or another tourist sees you trying to hold him or otherwise control him, could very well contact security if they construe what you are doing as abusive. And then seeing someone who looks like the police, or the actual police, could upset your child even further. Take it from me as when my DS was having a meltdown at school one day and the School Resource Officer was in the building and came to the classroom to help, my DS went off and started screaming how the police was arresting him and would be taking him to jail (the whole school heard him). We laugh about it now, but at the time it wasn't funny.

 

[toniosmom]

As a mom with 2 disabled children, and who has worked for 11 years in the field of disabilities, I am always amazed and dumbfounded by doctors who say they aren't sure what a child has, but then go and prescribe medications that are not approved for children! The medical field has no understanding how many of the medications your son has been prescribed work for children, what the amount of medication should be prescribed, and what potential damage they might cause in children that could be temporary or permanent. The side effects of medications can be worse then being off medications. Many medications linger in the body for a long time after stopping them. A good Occupational Therapist who has experience in dealing with children with disabilities would be helpful in addressing his sensory problems. A good behavior specialist who has experience in dealing with children with a disability would also be helpful in finding out what is causing the behavior by doing a good functional behavioral analysis and making recommendations from there. Just MHO.

Personally I would be very reluctant to take your son to WDW considering the explosive tantrums and the fact you will be alone with him. If he has a tantrum which I am sure can be very bad, and a CM or another tourist sees you trying to hold him or otherwise control him, could very well contact security if they construe what you are doing as abusive. And then seeing someone who looks like the police, or the actual police, could upset your child even further. Take it from me as when my DS was having a meltdown at school one day and the School Resource Officer was in the building and came to the classroom to help, my DS went off and started screaming how the police was arresting him and would be taking him to jail (the whole school heard him). We laugh about it now, but at the time it wasn't funny.

My son has twice weekly sessions with an Occupational Therapist at school. I've requested a sensory diet from her so that I can put some things in place at home that will benefit him. She mentioned the weighted vest, so I am going to look into that. I have already ordered the earphones. School is also doing another functional behavioral analysis (they did one last year).

DS also has twice weekly sessions with a behaviorist, who has been wonderful for me too. He helps me stay strong when I want to crumble into a puddle of tears. He has experience with bipolar, ADHD, and autistic children, so I am pretty confident in his abilities. He has been with us for six months now, so I think he has a good grasp on my son's behavior. He has also witnessed the worst of meltdowns. We have discussed WDW in great detail and he will be available to me by phone/text the entire week, if I need a little boost of confidence.

I think if I stay in tune with my son's moods and desires, we should have a decent week. All activities will be governed by what he wants to do. The only thing I have planned is dinner at Chef Mickey's the first day we arrive (we'll be at BLT for the first night) and MVMCP one night. We can always drop the dinner at Chef Mickey's, but I am hoping we get to do MVMCP. If not, it's okay -- I'd rather lose the money, than go and have a horrible experience.

By the way, I also had a police officer speak with him in a very firm tone. He went so far as to threaten to take him to jail the next time he hears about poor behavior. My five year old son wasn't afraid at all. If any police officer spoke to me like that, even as an adult, I would burst into tears. This kid is so sensitive to the comments of others, yet a police officer threatening his freedom had no effect. It was a bit disconcerting, to say the least.

I don't have the option of changing our plans at this late date and no one is available to join us. All I can do is to prepare as much as possible and pray real hard for a major dose of pixie dust.

 

[disneymami]

FYI
here is the link to the school
http://www.mccartonschool.org/
They do both, they are a school and they are a place you can take your child for a dx. I have not gone myself but my friend took her 3 year old. It is quite a thorough examination that could take 2 full days. They are well regarded in the field.

The carbone clinic is in rockland county
http://www.drcarbone.net/
This guy seems to be the expert in the field for children with challenging behaviors.

I hope that I've at least helped you somewhat. I know how frustrating it is to love your child so much and not be able to get him the real help he needs.
I wish you a lot of luck.

 

[toniosmom]

I hope that I've at least helped you somewhat. I know how frustrating it is to love your child so much and not be able to get him the real help he needs.
I wish you a lot of luck.

You have. Thank you.

 

[Bete]

but I do have an Alzheimer's mother. We just got back from a trip for a week in Tennessee last night, Nov.16. Anyway, I will not be taking another family vacation with her for a while and maybe never again. We may go to a few events like a wedding, etc. but my family vacationing days are basically done with her at least for a while. She is needy in other ways, too. I just can't see it and I've tried many different ways to handle the situation. There have been about 6 trips in the last three years (some short and some long) and nothing really works. Sooner or later there is a meltdown or two or three, etc. Actually, Disney has worked out the best of all the trips; maybe, it's because I like it best. I may hold out for one more trip there when they finish their new addition in MK, but it's too early to tell.

I don't feel comfortable with outside help; because, my mom will spit, kick, pull hair, scratch, etc.; so, my best answer is to stay home even though it feels like prison sometimes. Also, I can't afford constant outside help; I start thinking about other things I need to do with any extra money like fixing up the house, etc. I can't figure out her triggers and I've tried to do so. I have given her anti anxiety pills on trips, but then she's a zombie. I have good help from my husband, but it's getting to him more and more and we are both getting older, too. We do the trips together. I don't feel a nursing home is a good answer, either. I'm very afraid they would hurt her in some way when she acts out. I often wonder why there are so many hip replacements, etc. needed after staying at a nursing home and there are horror stories of nursing homes here in Indiana. In a National ranking we were close to last in how they rate nursing homes. A fall whether pushed by someone or not can result in broken bones and there's no real good way of telling what's what in a nursing home. I wish they would force nursing homes to have live webcams in commom places and their room so that you could view your loved one at all times. I just won't take that chance; she's my mother. I'm sure there are a few good nursing homes with high price tags which I can't afford, but overall, it's just a bad situation. I've heard of live web cams for dogs in a pampered Beverly Hills resort for dogs.

If there is no one to come along that you know you may need to consider outside hired help and pay for it. Since you would be there hand in hand it might work. I don't have any recommendations that way, but I'm sure there are outside agencies in the Orlando area that are willing to assist. Of course, this means you will pay for their meals, park tickets, etc. besides their agency fee. To me it's worth the peace of mind. I thought about it for my mom on one Disney trip with her staying in the resort with a companion, but she actually was pretty good on that trip; so, I passed on the extra help. Not all trips are bad, but most are not so good. I come home thinking why did I do this to begin with.

I feel from your description this is too much for one person to handle at Disney. It's like a time bomb that you don't know when it's going to explode. At home, you have many different avenues of help that are not there for you at Disney World. It sounds like you had a pretty decent trip with him once before, but that doesn't mean you will make it through another trip. He was younger then and he may be worse, now even if he has all your attention.

You may still have time to sell your timeshare points or at least try to for your time share to recoup some costs.

If you insist on the trip then short days at the parks and many diversions will help some. I would try some diversions at home and see how they work like the MP3 player and ear devices to deaden sound. I would be prepared with a list of recommended doctors you could go to once you are there if you need additional support. It sounds like you have it controlled to a certain degree. I would avoid long waits anywhere; unless, your son insists on a certain activity.

My prayers are with you.

 

[toniosmom]

Bete: I'm so sorry that you are going through such a difficult time with your mother. I have an aunt with Alzheimers and know how horrible it can be at times. However, having to deal with it on a constant basis because you are caring for a parent must be so stressful, to say the least. Do you have any kind of respite care available to you? We have something called Interfaith Network of Care here in New Jersey. It is volunteer and donation driven, so there is no cost for those who use it. They will usually transport members back and forth to meetings. It is called respite care because the respite is for the caregiver. It helps the disabled individual by getting them out of the house, but helps give the caregiver a break. My cousin used them for both parents and she felt like that was the one and only time of the day where she knew they were fine and she didn't have to worry. I hope you can find something like that in your area. Sending lots of prayers to you....

 

[Bete]

because sometimes you need to know when to quit. It's not fair to others who are trying to enjoy their own vacations when they have to witness an outburst. Loud outbursts in the resort room disturb others who may be sleeping. In the parks there can be stares and bad moments. I don't find it relaxing myself; because, I just don't know when the next incident will hit with her. The few hours of possible enjoyment are not worth what you need to go through sometimes. That's why I'm sharing. I will try to find other venues that may work better for us, right now.

I feel I can still manage one day outings without too much issue; so, we will try that route for a while. A day at a zoo, a day at a museum, see a play, see a concert, etc. We will have more company visit us at our home then the other way around for now. They understand and we will survive.

We are in a relatively small town and respite is not really an option, here. I'm lucky that I have a support group at our local hospital and we meet once a month. I appreciate your thoughts, here. Each area is different with what they offer.

In your case I would even consider a teenage niece or nephew to come along. Maybe, just start asking around and see if you get any bites on a companion; you never know; unless, you try. You may not need an adult but just an extra pair of hands if you are going to do the Disney trip. It wound be nice for you to be bonded with another person. I would have never consider any trip with my mom without my husband to help.

Bless you for taking on such a challenge when you adopted your child. I've been completely caring for my mom over the last 5 years, but I realize it won't be a lifetime and I will get my turn once again. I don't have children myself; so, I know how hard it can be to care for a loved one. I hope you find good answers for your son.

Since, I have recently came to the conclusion of stopping family vacations I wanted to share my thoughts with you. I'm always optimistic about trips before we go and then I realize it was a mistake to do it. It's basically too much overload for my mom. She has some great moments on a trip, but there are more bad moments than good; so, it's just time to say NO to trips.

I hope you have a wonderful trip; sometimes, it does happen where you can really enjoy each other.

 

[toniosmom]

We came home yesterday after 7 days at BLT. I am happy to report that there were no unmanageable explosive tantrums for the entire trip. Mostly, he was just very cranky at times and that I can handle. The noise from the fireworks bothered him a bit, but it was mostly the fireworks crowd at the MVMCP that bothered him the most.

Originally, we were supposed to stay one night at BLT and then move the rest of the week to AKV-Kidani. When we checked into BLT, I asked if there were any cancellations so that we could extend our time at BLT. At first, they couldn't swing it, but by the end of the day, they had us the entire week at BLT and we didn't even have to change rooms! Lesson learned - it never hurts to ask. I think being at BLT and so close to MK all week was helpful. We walked back and forth several times.

Unfortunately, the majority of the week was freezing cold, so we couldn't swim. I think that changed the dynamics of the vacation for us and I think we would have had a better time if we had been able to take a swim break each day like we usually do. Instead, we had to take breaks in the room with the horrible TV lineup. I think it made us both a bit cranky at times.

Our next trip is in April to BCV, so I know that the weather should be warm enough the entire week so that we can swim. I know my DS5 is going to love SAB.

Thank you all for your advice and support.

 

[Maggie'sMom]

Thanks for reporting back. I was just thinking about you a couple days ago and was wondering how your trip was. I'm so glad to hear you made it through the week without any unmanagable tantrums.

 

[bookwormde]

Glad to hear you had a successful vacation, there is someting about WDW that just meshes with our kids if we do thing in thier "time"

bookwormde

 

[mickey&minniealways]

Is he in an Early Intervention Progam. These are available throug the school district. If your local school district does not have one the will send him to another nearby. This is paid for by your district not the parents/cartaker. The reason I ask this is because they will have copeing techniques they can teach both of you. A local counceling center may also be able to help.

Other then that make sure you plan downtime. Even if it just swimming in the pool. The Animal Kingdom may also be a good park for him. Animals do seem to have a calming effect on most. If you are staying in a villa that might be a good choice for you. Either that or SSR or OKW. I prefer OKW with my 2 special needs children. 1 is 15 and the other is 24. It has a very relaxed feeling to it. There are many very good guidebooks out there but I like Passporter. It has a book called Open Mouse. It is for WDW with special needs. You can preview parts of it online and even download it. Their is a fee but it is minimal. It is like a disney bible for us. It covers a multitude of issues, even pregnancy, mobilty, dietary and much much more. Hope this helps.

 

[jlcw14]

Even though you're back from your trip (congrats on a successful one!) I just wanted to add something from my own experience for others who might look at this thread for advice.
I have two children on the autism spectrum, and my daughter used to have some pretty intense self-injurious behaviors (biting, scratching herself, dropping to the ground). She has improved GREATLY and our last few trips have been tantrum-free where she is concerned, but our first trip, she had a few stellar melt-downs. One of them happened at Splash Mountain after they had let her ride twice due to low crowds during the parade - when the second ride was done, the parade was over, the lines packed, and she expected a third ride. One of them occured on Kali River Rapids, because we had just been on primeval whirl, and the same thing - they let her ride twice due to low crowds. She expected the same at Kali. She didn't understand yet that we COULD ride again, but had to get back in line. I was able to get her off the raft, but she dropped to the ground and would NOT budge nor could we budge her. She was half-blocking the exit. After about 4-5 minutes passed and she wouldn't let up, they called the medics. My husband is an RN so he stayed with her and I went out with my son to wait on the bridge. Minutes after the medics arrived, she came strolling out, walking next to her father and the gurney. Apparently they took out a hypodermic needle to give her a sedative and she bounced right up - "NO NEEDLESTICKS! I'M UP!!". The CM (she was a managerial type) asked what she could do for us; We were committed to ABA and decided before the trip that if she tantrummed, she would go back to the resort to our room, and we were very strict about it as a consequence. My DH asked the CM for a ride to the resort because we knew it would be difficult to get her out of the park and on the bus willingly. They gladly accomodated us; they drove a van right over to us in Asia and drove her and my DH back to All-star movies. So even though the CM's can't help restrain, they will do what they can. In fact, ironically, it was their kindness that kind of flamed the behaviors! I have been offered a second trip around only once since then (on Big Thunder Mountain) and have politely declined because of this experience! Lol

 

[toniosmom]

We were committed to ABA and decided before the trip that if she tantrummed, she would go back to the resort to our room, and we were very strict about it as a consequence. My DH asked the CM for a ride to the resort because we knew it would be difficult to get her out of the park and on the bus willingly. They gladly accomodated us; they drove a van right over to us in Asia and drove her and my DH back to All-star movies. So even though the CM's can't help restrain, they will do what they can.

Thanks -- Good to know that there is something they can do, even if they can't help restrain. I had warned my son that if he had even ONE violent tantrum, we would go back to the room immediately and stay there the whole next day as well. Thankfully, I never had to follow through, but I was ready!

 

[Fly4free]

I just came across this thread while browsing for something else. I'm so glad to hear your trip went well. It is especially rewarding after facing all these challenges. I hope you are able to find some relief for your son for his symptoms. As a mom of a child with Severe ADHD and ODD I encourage you to hang in there. I know it is so frustrating not knowing what is going on with DS. As he gets older it will be easier to diagnose.

You are doing a great job; always remember you are your childs advocate

 

[mandylou6]

Hi i have an 11 year old with autism we have always taken a wheelchair with him on hols purely to help him cope with his anxieties and to stop him running off it is especially usefull in park,aiport and shopping malls. have a think about it? just becuase people are in a wheelchair dosent mean they are uncapable of walking

mandylou xx uk

 

[toniosmom]

I just came across this thread while browsing for something else. I'm so glad to hear your trip went well. It is especially rewarding after facing all these challenges. I hope you are able to find some relief for your son for his symptoms. As a mom of a child with Severe ADHD and ODD I encourage you to hang in there. I know it is so frustrating not knowing what is going on with DS. As he gets older it will be easier to diagnose.

You are doing a great job; always remember you are your childs advocate

Thanks! We just added a small dose of Abilify to his med cocktail and it seems to be making a difference. School reports the same improvement. Praying it continues!

Hi i have an 11 year old with autism we have always taken a wheelchair with him on hols purely to help him cope with his anxieties and to stop him running off it is especially usefull in park,aiport and shopping malls. have a think about it? just becuase people are in a wheelchair dosent mean they are uncapable of walking

mandylou xx uk

This was the first trip we took without a stroller. I has always put him in the stroller because it was a "safe place" for him and he would always complain about walking. He insisted on going without the stroller this trip and I went along with it. This past summer, I went on a camp trip with him to the zoo and he walked around all day in horrendous heat and humidity without a complaint. So, I thought that chances were good that he would do well at Disney. I think the key is to take my queues from him and go in that direction. For the most part, I was able to do that and it really helped. However, I wouldn't hesitate to bring the stroller again -- or use a wheelchair if necessary. All the best to you.