Autism bad behaviours- should I cancel?

[Esilef]

My son has just turned 6 and the doctors are testing ADHD drugs with very bad reactions. His behaviours are becoming uncontrollable on this medication.

 

My developmental pead has told me to cancel but we have 3 weeks until we cruise.

 

He is going to try a 3rd type of ADHD drug but the other 2 have caused him to go crazy.

I'm cruising with him on my own for 16 nights Sydney to Singapore.

 

My travel insurrance won't cover cancellation due to his autism. I will loose the full $4000 spent.

 

Should I cancel? Should I stop trialling medication.

 

Should I try & cruise and then leave the cruise if it's too much to deal with?

 

My husband will be away during this time do I an on my own on the cruise and if at home.

 

My son loved his last cruise and won't understand why daddy is not with us.

[cb at sea]

Wow...that's a lot to deal with! I don't know what to tell you...but do whatever you feel is right for your child...you have my best wishes!

[earthchild618]

Speaking from experience with the meds: try a non-stimulant med....the difference is astounding. Good luck. I hope you get to go. Remember: this is about you and your kid. Do things at your pace. Set realistic expectations for yourselves. And do what needs to be done for yourselves. If he needs a cabin break-look at it as a reading time break and not as a bad thing. If he can't handle dinner in the MDR, go to the buffet. Go with the flow and don't be disappointed if you can't do what the neuro-typical families are doing. This is what I'm doing for my son's first two cruises (one this summer and one next summer). You can do this! We A-typical moms can handle anything!

[Esilef]

Thanks for your responses.

 

We are going to trial the new ADHD drugs over the next couple if weeks. If they cause such a bad result I will stop and cruise without them and retrial on our return.

 

I have calming drugs which I will give him at key times when he is likely to get over whelmed stressed and likely to meltdown.

[maryjaden]

Only you knows your child. I would not cancel if he needs down time, go to your cabin. Kudos to you! I hope you and your son have a great time!

[kitkat343]

If you think you can handle him unmedicated and he would enjoy the cruise, I would stop trialing until after the cruise. I would try either the main dining room or buffet, but be prepared to eat all meals through room service if necessary. I would also only book private (just you and your son) tours, or DIY tours so I wouldn't have to worry about my child's behavior preventing others from enjoying their tours, and could return to the ship immediately if necessary.

[LilMissScareAll]

I would stop trials several weeks before the cruise so you and he can get back to his sense of normal. Nothing worse than a bad medical reaction while far away from your doctors/therapists/etc.

 

I would probably also bring up the fact that daddy will not be there from now until the cruise. IDK what kind of internet plan the ship you're on has, but maybe you can plan for a way to Skype or Facetime your husband a few times during your trip.

[Esilef]

I would stop trials several weeks before the cruise so you and he can get back to his sense of normal. Nothing worse than a bad medical reaction while far away from your doctors/therapists/etc.

 

 

 

I would probably also bring up the fact that daddy will not be there from now until the cruise. IDK what kind of internet plan the ship you're on has, but maybe you can plan for a way to Skype or Facetime your husband a few times during your trip.

 

 

He is now got the Ritalin out of his system & a different child. Still have not got the Vyvanse tablets (paperwork to go on a vip program to get it cheaper has not been processed)

 

Might wait until after we get back to trial.

 

His daddy will be in Papua New Guinea walking Kokoda trek so no internet or phones. Why we are going away is that he can't cope without daddy

[reallyitsmema]

He is now got the Ritalin out of his system & a different child. Still have not got the Vyvanse tablets (paperwork to go on a vip program to get it cheaper has not been processed)

 

Might wait until after we get back to trial.

 

His daddy will be in Papua New Guinea walking Kokoda trek so no internet or phones. Why we are going away is that he can't cope without daddy

 

Would having a note or a short video made by his Dad to be opened each day make life easier? Some little something special from Dad each day that he can look forward to or is that going to cause more anxiety?

[gerif]

I'm not sure why you think being in a strange environment for two weeks would be better for him than staying in familiar surroundings if he is to be without daddy during that period. I have a highly autistic grandson and one of the keys seems to be routine and familiar surroundings, so just wondering (although it's really none of my business, so you don't need to respond).

[Esilef]

I'm not sure why you think being in a strange environment for two weeks would be better for him than staying in familiar surroundings if he is to be without daddy during that period. I have a highly autistic grandson and one of the keys seems to be routine and familiar surroundings, so just wondering (although it's really none of my business, so you don't need to respond).

 

 

My son is very good with new environments & traveling. He has been around the world & we have never had issues with him. Where I have issues is when he is in a familiar environment and expects everything to be the same including daddy to be where he should be.

 

By keeping him at home whilst his father is away his comfort environment is changed and he won't cope at all with that.

 

His doctor is surprised by his love of new environments and routines.

 

It's all part of the autism challenge.

[Esilef]

Would having a note or a short video made by his Dad to be opened each day make life easier? Some little something special from Dad each day that he can look forward to or is that going to cause more anxiety?

 

 

 

 

Loving that idea. On his iPad we can record a message from daddy telling him to enjoy his cruise and that he loves him very much.

[gerif]

My son is very good with new environments & traveling. He has been around the world & we have never had issues with him. Where I have issues is when he is in a familiar environment and expects everything to be the same including daddy to be where he should be.

 

By keeping him at home whilst his father is away his comfort environment is changed and he won't cope at all with that.

 

His doctor is surprised by his love of new environments and routines.

 

It's all part of the autism challenge.

 

Ah, understood. Yes, it is a challenge and each case is very different. Hope you have a great time.

[Esilef]

Ah, understood. Yes, it is a challenge and each case is very different. Hope you have a great time.

 

 

I always prepare for the worst & hope to be surprised by the best.

[earthchild618]

I love the video idea!

[reallyitsmema]

Loving that idea. On his iPad we can record a message from daddy telling him to enjoy his cruise and that he loves him very much.

 

Oh good! I am glad you liked that idea.

 

I have two brothers who each have a child who is autistic and I know how much their ipads help them cope. My niece is like your son when it comes to traveling, she does wonderful but struggles terribly at home, especially in school settings. She is finally being home schooled after going to public, parochial and private schools over the last year.

 

I hope you both are able to have a wonderful cruise.

[dsrdsrdsr]

He's 6 years old. I don't believe that at that age, it is possible to make the judgement that taking drugs is the only possible way to treat him.

 

And if you agree that taking drugs is NOT the only possible way to treat him, then starting a new course of drugs just before going on holiday would not be sensible. Furthermore, starting a new course of drugs which experience suggests are going to make him much worse is very much not sensible. He's been on a cruise when he wasn't taking drugs and it went well. Why not take him on another cruise without taking drugs, and see if that goes well too?

 

Let me express my interest here. I'm not a medical professional, or even a medical amateur. But in principle, the idea that children should be fed a cocktail of drugs to control their behaviour is anathema to me. Far better to try every single possible other way for them to control their own behaviour before taking that option away.

 

I would suggest that you tell your paediatrician to postpone any further tests for a month or three while you see how it goes. And see if there are any self-help groups in the area that perhaps have a less drug-based approach to modifying children's behaviour.

[Esilef]

He's 6 years old. I don't believe that at that age, it is possible to make the judgement that taking drugs is the only possible way to treat him.

 

 

 

And if you agree that taking drugs is NOT the only possible way to treat him, then starting a new course of drugs just before going on holiday would not be sensible. Furthermore, starting a new course of drugs which experience suggests are going to make him much worse is very much not sensible. He's been on a cruise when he wasn't taking drugs and it went well. Why not take him on another cruise without taking drugs, and see if that goes well too?

 

 

 

Let me express my interest here. I'm not a medical professional, or even a medical amateur. But in principle, the idea that children should be fed a cocktail of drugs to control their behaviour is anathema to me. Far better to try every single possible other way for them to control their own behaviour before taking that option away.

 

 

 

I would suggest that you tell your paediatrician to postpone any further tests for a month or three while you see how it goes. And see if there are any self-help groups in the area that perhaps have a less drug-based approach to modifying children's behaviour.

 

 

Great points! We have tried not using medication. Years of therapy (speach, OT, bahviour, physc as well as school, diet, exercise) but nothing has worked like medicine has with such a positive result if risperdril.

 

He has started to talk since being placed on this but since hitting the age of 6 last week the pressure to get him to the next step has increased.

 

All medication trials have been done with guidance of teachers, developmental pead and us.

 

No we have not got the results we are after with medication.

 

But as a mum with a child with autism I'm willing to try anything and take any advise. So thank you for your advice.

[justaims29]

My son is very good with new environments & traveling. He has been around the world & we have never had issues with him. Where I have issues is when he is in a familiar environment and expects everything to be the same including daddy to be where he should be.

 

By keeping him at home whilst his father is away his comfort environment is changed and he won't cope at all with that.

 

His doctor is surprised by his love of new environments and routines.

 

It's all part of the autism challenge.

 

 

That is fantastic, and makes complete sense. Along with the video idea (which I LOVE and will file away for when DH and I go in August!), I might also suggest a social story to be read before and during the trip. "Mum and I are going on a ship, but Dad has to work. But I will get to do lots of fun things and then I will see Dad after our trip." And maybe give him a calendar to show the days and let him mark them off? I know our answer to almost everything with my DS who has autism (6-year-old as well) is "Social Story!!" I will also be bold and suggest considering an anti-anxiety med. DS is on Zoloft and it has been a godsend. He is still his quirky self but less irritable and just more "comfortable in his own skin", as one of his therapists said.

 

As for the ADHD, my 8-year-old has had a lot of success with Vyvanse. He's on Quillivant now which we love because it's a liquid but is also time-release. I am a cruise newbie but I definitely know autism and ADHD. PM me anytime you want to chat!

[Esilef]

That is fantastic, and makes complete sense. Along with the video idea (which I LOVE and will file away for when DH and I go in August!), I might also suggest a social story to be read before and during the trip. "Mum and I are going on a ship, but Dad has to work. But I will get to do lots of fun things and then I will see Dad after our trip." And maybe give him a calendar to show the days and let him mark them off? I know our answer to almost everything with my DS who has autism (6-year-old as well) is "Social Story!!" I will also be bold and suggest considering an anti-anxiety med. DS is on Zoloft and it has been a godsend. He is still his quirky self but less irritable and just more "comfortable in his own skin", as one of his therapists said.

 

As for the ADHD, my 8-year-old has had a lot of success with Vyvanse. He's on Quillivant now which we love because it's a liquid but is also time-release. I am a cruise newbie but I definitely know autism and ADHD. PM me anytime you want to chat!

 

 

Thanks heaps for the advice! Love the idea about the social story. We are still waiting for the Vyvanse to arrive. We are using the Risperdril as anti anxiety and thus has been so good as it allows him to sleep and he has learnt how to talk. Since starting on it.

 

Might look into quillivant ( is this availabile in Australia???)

[goofy810]

I would say go, That said I am an adult who has had ADD and my whole life and been on many of the meds, if you want to email me (matt@mrltech dot com) i can give you some good info on what drugs are good and what ones are not, I have found the best one at this point.

 

 

 

My son has just turned 6 and the doctors are testing ADHD drugs with very bad reactions. His behaviours are becoming uncontrollable on this medication.

 

My developmental pead has told me to cancel but we have 3 weeks until we cruise.

 

He is going to try a 3rd type of ADHD drug but the other 2 have caused him to go crazy.

I'm cruising with him on my own for 16 nights Sydney to Singapore.

 

My travel insurrance won't cover cancellation due to his autism. I will loose the full $4000 spent.

 

Should I cancel? Should I stop trialling medication.

 

Should I try & cruise and then leave the cruise if it's too much to deal with?

 

My husband will be away during this time do I an on my own on the cruise and if at home.

 

My son loved his last cruise and won't understand why daddy is not with us.

[Esilef]

I would say go, That said I am an adult who has had ADD and my whole life and been on many of the meds, if you want to email me (matt@mrltech dot com) i can give you some good info on what drugs are good and what ones are not, I have found the best one at this point.

 

 

Thank you for your advice!

[sherryf]

I would say go, That said I am an adult who has had ADD and my whole life and been on many of the meds, if you want to email me (matt@mrltech dot com) i can give you some good info on what drugs are good and what ones are not, I have found the best one at this point.

 

You have found the best one for YOU. Not all drugs work the same on all people. The one that works great for you might be horrible for someone else. There is no "best". That's why there are so many to choose from.

[Esilef]

You have found the best one for YOU. Not all drugs work the same on all people. The one that works great for you might be horrible for someone else. There is no "best". That's why there are so many to choose from.

 

 

This is why we have been advised to trial drugs with close consultation of a doctor.

 

America also seems to have a lot more drugs available than Australia.

 

I hope that more of these autism/ADHD drugs are trailed and tested in the USA and then passed by the Australian medical authority.

 

With more & more children & adults bring diagnosed, hopefully more research will be done into therapies and medical treatment.

[N2Mischief]

I just want to let you know how much I admire you for taking this vacation on. I am grandma to a 3 .5 year old with severe non-verbal autism. She lives at our home with her mother, my husband and I, and her aunt and uncle. As a family we really want to try to take a cruise, and with all 5 adults it seems a daunting task, I can't imagine doing it alone.

 

I hope you have an absolutely wonderful time!

 

I can't advise on medications because we haven't gone that route yet. But I am familiar with them wanting routine.

 

My husband and I recently left for over a month...28 days cruising then a few days in Miami. Olivia became very unruly while we were gone both at school and at home. Almost uncontrollable. As soon as we returned she was back to her old self.

 

Please enjoy, I hope everything is beyond your expectations!