Two personal issues.

[joolz1910]

I'm going to be asking for a lot of advice about my trip in 2012, and I thought it was time to mention a couple of things - sort of 'get it out there' iykwim.

My DD has an acute anxiety disorder. She has had it for about 3 years now and has counselling and is on medication. She is being statemented at school for anxiety. It has been really hard on all of us and we have tried everything we can think of to support her. She is 11 years old and it breaks my heart that her childhood is being affected so badly by this problem. It impacts massively on anything we do as a family, as we have to consider whether she will have a panic attack / refuse to go / be unable to take part etc.

Some of the regular posters might remember that my Dad passed away last March. In November 2010, my Mum was diagnosed with a terminal illness. It knocked us all for six, as you can imagine. She is now disabled and has to use oxygen when she moves around.

I have never posted about these things before becasue they are so personal and I don't want to be all 'doom and gloom' on the Dis. However, both of these personal issues are likely to have an impact on my approach to planning our trip and for that reason, I thought I would mention them. It is also helpful to be able to refer to my DD's problem and my Mum's illness if it becomes necessary over the next year or so.

I'm genuinely not looking for sympathy, just understanding and practical advice from my friends on the Dis.

 

[RadioMom]

I'm going to be asking for a lot of advice about my trip in 2012, and I thought it was time to mention a couple of things - sort of 'get it out there' iykwim.

My DD has an acute anxiety disorder. She has had it for about 3 years now and has counselling and is on medication. She is being statemented at school for anxiety. It has been really hard on all of us and we have tried everything we can think of to support her. She is 11 years old and it breaks my heart that her childhood is being affected so badly by this problem. It impacts massively on anything we do as a family, as we have to consider whether she will have a panic attack / refuse to go / be unable to take part etc.

Some of the regular posters might remember that my Dad passed away last March. In November 2010, my Mum was diagnosed with a terminal illness. It knocked us all for six, as you can imagine. She is now disabled and has to use oxygen when she moves around.

I have never posted about these things before becasue they are so personal and I don't want to be all 'doom and gloom' on the Dis. However, both of these personal issues are likely to have an impact on my approach to planning our trip and for that reason, I thought I would mention them. It is also helpful to be able to refer to my DD's problem and my Mum's illness if it becomes necessary over the next year or so.

I'm genuinely not looking for sympathy, just understanding and practical advice from my friends on the Dis.

Sometimes it just feels good to be able to write it out and get it off your chest for a few minutes. There's nothing wrong with a little sympathy either! It's good to know that people care, especially when they have never met you.

Two of my nephews have anxiety disorder. A third has autism and a fourth as ADD. Christmas dinner with the whole family is interesting to say the least! And I don't say that as a slight to my nephews, it is what it is. We handle all of their challenges with a sense of humour and much much love and patience. The AD, ADD and autism are just a part of who they are and a part of what makes them the blessings that they are.
With that being said, my nephews with AD are a little older than your daughter now, but when they were younger my sisters didn't try to make a big deal out of things. If they were taking a big trip somewhere or if they were going to be visiting someone special, it wasn't really mentioned until a day or two before the day. My one nephew has a compromised immune system, so if he gets sick, plans get cancelled. And if he's been stressing about those plans for weeks or months, his AD kicks into overdrive and it's just awful for him.
I know that's difficult with a trip to Disney on the horizon! That's something you want to be excited for every single day!
Does she enjoy taking the plane ride? Would her medication make that easier? My sisters also did exercises with my nephews to help them take control of their anxiety. Some worked, some didn't. But it put the situation in the childs' control to some extent and that did ease the anxiety.
I'm so sorry to hear about your father and now your mother's illness. I'm afraid I don't have any advice or words of wisdom as I've never been in this situation. I can't even imagine how difficult it must be for her and your family.

 

[joolz1910]

Sometimes it just feels good to be able to write it out and get it off your chest for a few minutes. There's nothing wrong with a little sympathy either! It's good to know that people care, especially when they have never met you.

Two of my nephews have anxiety disorder. A third has autism and a fourth as ADD. Christmas dinner with the whole family is interesting to say the least! And I don't say that as a slight to my nephews, it is what it is. We handle all of their challenges with a sense of humour and much much love and patience. The AD, ADD and autism are just a part of who they are and a part of what makes them the blessings that they are.
With that being said, my nephews with AD are a little older than your daughter now, but when they were younger my sisters didn't try to make a big deal out of things. If they were taking a big trip somewhere or if they were going to be visiting someone special, it wasn't really mentioned until a day or two before the day. My one nephew has a compromised immune system, so if he gets sick, plans get cancelled. And if he's been stressing about those plans for weeks or months, his AD kicks into overdrive and it's just awful for him.
I know that's difficult with a trip to Disney on the horizon! That's something you want to be excited for every single day!
Does she enjoy taking the plane ride? Would her medication make that easier? My sisters also did exercises with my nephews to help them take control of their anxiety. Some worked, some didn't. But it put the situation in the childs' control to some extent and that did ease the anxiety.
I'm so sorry to hear about your father and now your mother's illness. I'm afraid I don't have any advice or words of wisdom as I've never been in this situation. I can't even imagine how difficult it must be for her and your family.

Thank you for your thoughtful response. They thought that my DD had autism at one point because a lot of the behaviours are very similar. I am starting to wonder whether she will get on the plane She has a panic attack and then becomes hysterical when her anxiety kicks off. Medication doesn't seem to make any difference. I have decided that we won't tell her until we are at the airport - this is the best option for her as she works herself up over time. I don't want my other two children to miss out on WDW.

 

[RadioMom]

Is it possible for you to request pre-boarding for your family? Get to the airport extra early, explain to the airline the situation and I think they might be willing to work with you rather than having your daughter stressed with a crowd of people getting on the plane.
If she gets an opportunity to get on before everyone else, take a look around, get comfortable and maybe set up something special for her to keep her distracted? Since they make you shut off electronics, perhaps do a little goody bag with new books, treats, puzzles, whatever she enjoys that will keep her calm and occupied while people get on and settled and through take off.
And what if you put her in more control of the situation? Picking a parking spot or letting her hold something important? The little things that might make her more anxious are ones that she could have a say in.
My nephew had one medication that just made him sleep all the time. And another that made him feel absolutely nothing. He was like a zombie. It took some time to figure out what would work for him. I don't think there's anything 100% perfect and it is a juggling act for a while until you get the right one.

 

[Ware Bears]

Juliette, I'm afraid I can't offer any advice and I appreciate your saying you're not looking for sympathy but I do hope you'll accept a hug.

 

[joolz1910]

Is it possible for you to request pre-boarding for your family? Get to the airport extra early, explain to the airline the situation and I think they might be willing to work with you rather than having your daughter stressed with a crowd of people getting on the plane.
If she gets an opportunity to get on before everyone else, take a look around, get comfortable and maybe set up something special for her to keep her distracted? Since they make you shut off electronics, perhaps do a little goody bag with new books, treats, puzzles, whatever she enjoys that will keep her calm and occupied while people get on and settled and through take off.
And what if you put her in more control of the situation? Picking a parking spot or letting her hold something important? The little things that might make her more anxious are ones that she could have a say in.
My nephew had one medication that just made him sleep all the time. And another that made him feel absolutely nothing. He was like a zombie. It took some time to figure out what would work for him. I don't think there's anything 100% perfect and it is a juggling act for a while until you get the right one.

Some great ideas. I'm not sure whether we would be better off boarding first or last. My DD experiences claustrophobia and doesn't like crowds, so I suppose it's going to be touch and go whatever we do. I sedated her on her first day of secondary school, so she would be calmer. It didn't work and she became hysterical when it was time to go.

Juliette, I'm afraid I can't offer any advice and I appreciate your saying you're not looking for sympathy but I do hope you'll accept a hug.

Thank you Elaine.

 

[higgy66]

Didn't just want to read and run so although I have no words of wisdom what I can do is send you a big

I can not imagine what you're going through and the added stress this must add to what should be an exciting planning stage.

I hope now by explaining your situation lots of others on the Disboards can offer advice if they have been in a similar situation

 

[joolz1910]

Didn't just want to read and run so although I have no words of wisdom what I can do is send you a big

I can not imagine what you're going through and the added stress this must add to what should be an exciting planning stage.

I hope now by explaining your situation lots of others on the Disboards can offer advice if they have been in a similar situation

Thank you.
I know a lot of Dissers have children with issues and I'm hoping that they can point me in the right direction. I will be asking for a GAC card when we get there, as being in queues is impossible. I wouldn't know about those without the info on these boards.

 

[mandymouse]

I wish I had some words of wisdom too hun, so I'm sending you and your family a big hug instead

I hope someone on here is able to offer you some advice

 

[joolz1910]

I wish I had some words of wisdom too hun, so I'm sending you and your family a big hug instead

I hope someone on here is able to offer you some advice

Thanks Mandy. I'm hoping that she will have improved next year. Then again, I thought the same last year and the year before...

I have asked my MIL to come to the airport to take my DD home if she won't board the plane I know that sounds awful, but I don't see what else I could do. If she refuses to board, and we all get off the plane, I doubt whether the insurance would pay out and my other two children would be devastated. Why is life soooooo complicated???

 

[stubb]

Hi we always get a gac card for our son who has downs. I would recommend that you get a letter from your gp to show to guest services. Disney will give you a card for the entire duration of the trip but universal you have to ask each time you visit.

We then keep the card to show for future trips.
Does your daughter have an iPod or ds game? Something that she loves and can look at while you are at the airport,something that has ear phones so that she won't feel so over whelmed by the hustle and bustle? We usually go with virgin who are excellent, we use the special assistance queue which as a rule is quite quick.
I am sorry for your situation I think that your daughter needs some help with developing coping strategies so that she is better equipped to deal with her anxieties which must feel so frightening for her. I wonder if she could be refered to an educational physiologist. Keep fighting for her and demand that
she be seen by the relevant people.
I really hope that you and your daughter get the help you need. Maybe a board with pictures of what will happen on the day ie the suitcase the tickets the passport picture of the airport etc so that your daughter can see this and understand the process sorry if that sounds simplistic but it could help to ease the feelings of anxiety that start to build up.
I wish you luck.
Michelle

 

[joolz1910]

Hi we always get a gac card for our son who has downs. I would recommend that you get a letter from your gp to show to guest services. Disney will give you a card for the entire duration of the trip but universal you have to ask each time you visit.

We then keep the card to show for future trips.
Does your daughter have an iPod or ds game? Something that she loves and can look at while you are at the airport,something that has ear phones so that she won't feel so over whelmed by the hustle and bustle? We usually go with virgin who are excellent, we use the special assistance queue which as a rule is quite quick.
I am sorry for your situation I think that your daughter needs some help with developing coping strategies so that she is better equipped to deal with her anxieties which must feel so frightening for her. I wonder if she could be refered to an educational physiologist. Keep fighting for her and demand that
she be seen by the relevant people.
I really hope that you and your daughter get the help you need. Maybe a board with pictures of what will happen on the day ie the suitcase the tickets the passport picture of the airport etc so that your daughter can see this and understand the process sorry if that sounds simplistic but it could help to ease the feelings of anxiety that start to build up.
I wish you luck.
Michelle

Thanks Michelle. My DD was referred to CAMHS a couple of years ago and goes fortnightly. They have said they will write a letter so that I can take it to Disney. I like the idea of a a DS or Ipod - that might help. I will also ask Virgin about the special assistance queue.

 

[lisateaches]

My DD9 also has anxiety. It was ALWAYS there, but when she had stillborn brother when she was nearing 4 years old, the anxiety took the reigns and has never let go. Her anxiety would come out in VIOLENT fits at home or wherever we were with her. It never came out without her family there, but if she was having anxiety and we weren't with her, it would come out 100 times in force when she was safe with us. We took her to see psychologists and psychiatrists and they were even perplexed with her. One admitted she had never seen any one like our dd ( after physically helping me carry her to our car). She is on medication and I have to say the only book that seemed to help is The Explosive Child. I really think she is a mix of anxiety and depression, but counseling has never helped because w/o medicine she is too far gone and with it she can easily rationalize.
Now, as for Disney. I hope your experiences will be like ours. We took a healing trip when she was four almost five. It was a family trip to help us spend time together after a very difficult year. I was very concerned with her anxiety. I have NEVER seen that child so well behaved and happy. This was even before medicine. I hope Disney provides a little magic for you.

 

[buzz for boys]

I don't post much on the community board anymore but couldn't read and run the dissers helped me through one of the hardest parts of my life and I wanted to say I share your sentiments on sympathy but it genuinely helped me to know I could rant and receive understanding and warmth from ppl I had never met , don't feel bad for explaining your family situation xxxxx

I also sympathise with feeling that the siblings miss out because of the family dynamic my best advice for this is to ask Camhs to refer you for a family therapy session, we did this recently and I wish I had done it sooner as the children don't feel anything that we thought they would and it has helped immensely in leaving the negative in the past and dealing with the present!

Virgin special assistance are excellent and we even went on board the day before our flight with the pilot who was flying the plane with us this helped my autistic son loads as the fear had gone!! I also always ask to be seated at the front of the plane so he can't see people all around him , I second the iPod suggestion this has helped us no end as he will wear the earphones when he feels anxious , also dark glasses as it's a bit like adding a barrier between himself and the other people. A very long post here but I will finish with saying feel free to pm me anytime xxxxxx

 

[joolz1910]

My DD9 also has anxiety. It was ALWAYS there, but when she had stillborn brother when she was nearing 4 years old, the anxiety took the reigns and has never let go. Her anxiety would come out in VIOLENT fits at home or wherever we were with her. It never came out without her family there, but if she was having anxiety and we weren't with her, it would come out 100 times in force when she was safe with us. We took her to see psychologists and psychiatrists and they were even perplexed with her. One admitted she had never seen any one like our dd ( after physically helping me carry her to our car). She is on medication and I have to say the only book that seemed to help is The Explosive Child. I really think she is a mix of anxiety and depression, but counseling has never helped because w/o medicine she is too far gone and with it she can easily rationalize.
Now, as for Disney. I hope your experiences will be like ours. We took a healing trip when she was four almost five. It was a family trip to help us spend time together after a very difficult year. I was very concerned with her anxiety. I have NEVER seen that child so well behaved and happy. This was even before medicine. I hope Disney provides a little magic for you.

Thank you so much - this sounds exactly like my DD. She is so much worse when she is with us. Starting secondary school has been hell I have asked the child psychologist and the GP to prescribe something stronger for her as I think anti-depressants might help. Unfortunately these can't be prescribed for children under 16. I will look up the book you mention. I wish there was a support group as my DD thinks she is the only one in the world with this problem.

I really hope Disney gives us the time as a family to enjoy being together.

I don't post much on the community board anymore but couldn't read and run the dissers helped me through one of the hardest parts of my life and I wanted to say I share your sentiments on sympathy but it genuinely helped me to know I could rant and receive understanding and warmth from ppl I had never met , don't feel bad for explaining your family situation xxxxx

I also sympathise with feeling that the siblings miss out because of the family dynamic my best advice for this is to ask Camhs to refer you for a family therapy session, we did this recently and I wish I had done it sooner as the children don't feel anything that we thought they would and it has helped immensely in leaving the negative in the past and dealing with the present!

Virgin special assistance are excellent and we even went on board the day before our flight with the pilot who was flying the plane with us this helped my autistic son loads as the fear had gone!! I also always ask to be seated at the front of the plane so he can't see people all around him , I second the iPod suggestion this has helped us no end as he will wear the earphones when he feels anxious , also dark glasses as it's a bit like adding a barrier between himself and the other people. A very long post here but I will finish with saying feel free to pm me anytime xxxxxx

Thank you Louise. I really like the idea of the dark glasses. I have added that to my list. I will also consider where we are seated on the plane. My DD doesn't like to see other people around her but also panics if she is not near to a toilet. I don't want the rest of our lives to be governed by DD's anxiety, and you are so right, it helps to talk to people on the Dis - they give some excellent advice.

 

[buzz for boys]

Just to let you know that I have a copy of the book the explosive child and if you would like to borrow it drop me a pm with your address and I'll happily lend it to you xxxx we are in Orlando at the mo but I'll post it ad soon as we get home if that's any good to you ?

 

[joolz1910]

Just to let you know that I have a copy of the book the explosive child and if you would like to borrow it drop me a pm with your address and I'll happily lend it to you xxxx we are in Orlando at the mo but I'll post it ad soon as we get home if that's any good to you ?

Thanks hun.
Hope you are having a great time.