Just had a really bad conversation with my son's consultants secretary. I made myself look really stupid as I got really cross, then really upset and couldn't stop crying. DS has got CFS a neurological condition and to cut a long story short will be going to disney 15th August with him and the rest of my family - husband and 3 other children. Anyhow asked for a letter confirming his diagnosis so that I could show it to disney in order to obtain GAC only to be told that DS's consultant will not do letter as he thinks it is ludicrous that we are taking a child with CFS on a holiday like that. He will not endorse it and is annoyed that we didn't discuss it with him. Not that bothered about not having letter as I have an old letter anyway from last year and we will tour parks early and sensibly anyway and use pushchair as wheelchair if needed but obviously need GAC for that. We will obviously take lots of breaks and rest days as we are in Florida for 2 and a half weeks However after what consultant said I am now feeling really bad for booking holiday. It is really difficult though as I have the other children to consider as well and quite honestly whatever holiday we take DS whether it be in a tent or to the coast there are lots of issues to worry about in terms of him overdoing it. The only way he wouldn't overdo it is if we stayed in the house all the time. Sorry for rambling but needed to get this off my chest.
Bad mother? DS amd CFS
- Thread starter sarahjane
- Start date
I take it because you use the words pushchair and holiday you are not from the USA. You do not have to have a letter to get a GAC. It is illegal for them to ask you for one. All you have to do is go to guest relations and explain why your child needs for the GAC.
As someone else already said you don't need a letter from your Dr. Even if you had it they probably wouldn't look at it.
Just let the CM at Guest Relations know what you need. Be specific. Ask for Stroller as Wheelchair if you need it. Specify if you need a sheltered waiting area if available. Ask for alternative entrance when available... anything else you can think of.
And try to have fun!
Sara
Just let the CM at Guest Relations know what you need. Be specific. Ask for Stroller as Wheelchair if you need it. Specify if you need a sheltered waiting area if available. Ask for alternative entrance when available... anything else you can think of.
And try to have fun!
Sara
Nanajo1
DIS Veteran
- Joined
- Sep 23, 1999
As Michigan said you don't need a note to obtain a GAC. Bring your old GAC for reference if it has what accommodations your DS needs. You and your son go to a Guest Relations area and state what your needs are. You sound like a very caring mother who knows how to care for her children. Pixie Dust for a great trip.
dj2
all my little ducks in a row...
- Joined
- Nov 5, 2003
You are NOT a bad mother! It is hard to balance the needs of the whole family, and it sounds like you're working very hard to do just that. Sorry your son's consultant made you feel bad. WDW can be a real pick-me-up and people's minds need as much attention as their bodies.
Relax, take it slow, and have a great time!!!
-dj
Relax, take it slow, and have a great time!!!
-dj
dj2 said:
I agree. I've seen a few doctor's in my time that just can't grasp what having a child with a disability is like outside the doctor's office. I guess they too are human and few of us did before we lived it. You are not a bad mother, for goodness sake! You understand the limitations of your child and will take appropriate measures -- this is the reason you asked for the letter. Hope you have a great trip. We will be there on the 15th, too.
eeyore45
<font color=darkorchid>Do-it-yourself pixie dust =
- Joined
- Jun 18, 2004
mlwear said:I agree. I've seen a few doctor's in my time that just can't grasp what having a child with a disability is like outside the doctor's office. I guess they too are human and few of us did before we lived it. You are not a bad mother, for goodness sake! You understand the limitations of your child and will take appropriate measures -- this is the reason you asked for the letter. Hope you have a great trip. We will be there on the 15th, too.
Yeah, what mlwear said!!
adding
and 
and WELCOME to the DIS
You are the mom, you get to decide, you love your child!!
You are a good mom!! 
LuluLovesDisney
<font color=red>If you're not outraged, you're not
- Joined
- Feb 28, 2005
I think it is horrific of him to be so judgmental and to decide that you should never be able to take your family on a vacation. He is obviously being immature because he is resentful you did not discuss it with him. You are not a bad mother; quite the opposite. I'm sorry you've been made to feel otherwise.
- Joined
- Jan 20, 2001
I would fire him in an instant if I (you) could replace him.
You did not ask for his "permission" nor should you. He should be asking you what he can do for you and your family. At this point, he should be asking for your forgiveness for making your life any harder than it needs to be. Remind him who he works for. I would really like to call him names that surely would be edited by the DIS. Blah. Taking your child out into the world is the right choice. I hope he has a wonderful time. Pixie dust for your family trip!
You did not ask for his "permission" nor should you. He should be asking you what he can do for you and your family. At this point, he should be asking for your forgiveness for making your life any harder than it needs to be. Remind him who he works for. I would really like to call him names that surely would be edited by the DIS. Blah. Taking your child out into the world is the right choice. I hope he has a wonderful time. Pixie dust for your family trip!
- Joined
- Jan 20, 2001
Just wanted to add that you should demand he give you a letter stating diagnosis because you should have one for your records for you to use whenever and however you choose or need.
Is your child school age? Does he have an IEP? Surely your doctor had to provide a diagnosis for that?
Is CFS Chronic Fatigue Syndrome? Does your doctor not "believe" in the diagnosis or something?
One last thing: he has to provide a copy of your child's records if you request it. By law. Do that, and you will have all the proof you need for whatever reasons in the future. (although, WDW will not require that proof)
Is your child school age? Does he have an IEP? Surely your doctor had to provide a diagnosis for that?
Is CFS Chronic Fatigue Syndrome? Does your doctor not "believe" in the diagnosis or something?
One last thing: he has to provide a copy of your child's records if you request it. By law. Do that, and you will have all the proof you need for whatever reasons in the future. (although, WDW will not require that proof)
chamonix said:
We do have a letter back from September 2004 when original diagnosis was given and a new one will have to be provided as an update to confirm that my son is still not able to attend school full time etc due to his illnessl. However he will not give me the new letter in time for me to go to disney.
Yes CFS is chronic fatigue syndrome and the doctor I am talking about is specialises in neurology with CFS as his special interest. In the UK he is renowned for this. Obviously he does believe in the diagnosis but won't give me a letter in time for Disney because he believes that the holiday is most unsuitable for a child with CFS.
My son is only 5 and has had one year at school so far - we call it Reception in England. He was only able to attend about 50 per cent of the time last year due to the illness. When he goes back in September he will be in year 1 and again he will only be doing mornings for the forseeable future (our school day is 8.55am to 3.05 am). He will be getting an IEP put together for him when he goes back in September. It has taken me a while to get this far with the school.
Subsequent to my original post my dh has spoken to our GP (that is our family doctor opposed to son's specialist) who is going to give us our letter just stating that he still has CFS etc. Reading these posts we won't need this anyway for disney.
I was just really upset by the consultants attitude because the last time we saw him he was telling me and my husband that it was very difficult to manage the illness in a young child who didn't know/understand their limitations but that we were coping really well. He also said that I should continue to listen to my instincts because so far on the whole they had been good. This is what I have done with the disney holiday but he obviously disagrees. This has left me feeling bad. At the end of the day I only want what is best for my children.
Thanks everybody for listening. I haven't posted much but I do read a lot of the threads and everybody is most supportive.
I get really emotional too. It's our kids we are talking about and our mothering. We try so hard to do what is best and when someone questions our decisions it hurts. Although, as the years have passed, my skin is much thicker.
After reading your last post, he probably isn't that horrible. You likely won't find many docs that specialize in this field and he has helped you with school.
Perhaps, he is thinking your son will be upset that he can't keep up or will want to do things that he doesn't have the energy for. Still, he is your child and you know how to handle him. I definitely wouldn't change my plans based on his advice and would get the GAC anyway.
It is hard to balance having other children. They have needs to. My other son has wanted to go to Disney for years now and we have had to put it off. He hears about his other friends going and it has made me feel badly, but I didn't feel that I had a choice (unfortunately, his grandparents aren't the type that would take him or anything like that). He is SO excited for our trip. He has thanked me dozens of times for deciding to go. He is 10 and if we had waited much longer I don't think it would be the same. We will just have to make the best and most of it with our younger ASD son (also excited to go).
Enjoy your trip. You are doing the right thing and are a great Mom.
After reading your last post, he probably isn't that horrible. You likely won't find many docs that specialize in this field and he has helped you with school.
Perhaps, he is thinking your son will be upset that he can't keep up or will want to do things that he doesn't have the energy for. Still, he is your child and you know how to handle him. I definitely wouldn't change my plans based on his advice and would get the GAC anyway.
It is hard to balance having other children. They have needs to. My other son has wanted to go to Disney for years now and we have had to put it off. He hears about his other friends going and it has made me feel badly, but I didn't feel that I had a choice (unfortunately, his grandparents aren't the type that would take him or anything like that). He is SO excited for our trip. He has thanked me dozens of times for deciding to go. He is 10 and if we had waited much longer I don't think it would be the same. We will just have to make the best and most of it with our younger ASD son (also excited to go).
Enjoy your trip. You are doing the right thing and are a great Mom.
MySonAdoresPoohBear
Earning My Ears
- Joined
- Feb 18, 2005
In your first post it looked like you spoke to the secretary. I have often run into secretaries who like to stress their own viewpoints, and the physician isn't aware of it. I have now started to speak directly to the dr's whenever possible. I've even composed faxes just to make sure that all of my facts reach their desk. Either way, I would suggest talking with the Dr. now as you are clearly upset about this matter and need to clear the air with him so that you and he can go on and work towards what is best for your son as well as your family as a whole.
Joyce
Joyce
I have Fibromyalgia and CFIDS and I wanted to give you a few tips before going. Get your son a wheelchair or a stroller. The less I walk the less fatigued I get. I do really well taking a nap about 2PM and I go back to the parks about 4PM. I have never recieved a GAC for my condition becasue I get them for my kids issues but I am sure they will have something for you if you explain your sons needs to them. It will not shorten your wait time on the rides all the time but it does sometimes provide a place for him to sit for the wait of the line, it really depends on what his needs are.
It is horrible that your son health care providers still think that these conditions are all in the head and not true diagnoses. There have been studies that prove that people with CFIDS and Fibro do not have the same blood flow to certain parts of the brain. A very good site to vist for your son for information is www.fbrohugs.com they are very caring there and it is like a second family to me. I hope you have a wonderful trip and I am so sorry your son has to deal with this nasty syndrome at such a young age.
JenJen
It is horrible that your son health care providers still think that these conditions are all in the head and not true diagnoses. There have been studies that prove that people with CFIDS and Fibro do not have the same blood flow to certain parts of the brain. A very good site to vist for your son for information is www.fbrohugs.com they are very caring there and it is like a second family to me. I hope you have a wonderful trip and I am so sorry your son has to deal with this nasty syndrome at such a young age.
JenJen
- Joined
- Aug 23, 1999
...what the others said......
You won't need a letter to request a GAC; just be readdy to discuss your child's needs.
A stroller would better fit the size of a 5 year old (and would probably get you less attention).
If you still have the GAC from last year, showing it to the CMs is helpful.
You won't need a letter to request a GAC; just be readdy to discuss your child's needs.
A stroller would better fit the size of a 5 year old (and would probably get you less attention).
If you still have the GAC from last year, showing it to the CMs is helpful.
SaraJane www.pediatricnetwork.com another very good site for CFS
My DD 15 yrs old has CFS, Fibro, Central Pain Processing Disorder and a few other things. A dr can believe in CFS but not always give the best advice in every situtation that is true with any dr. I learned years ago there is a fine line difference where Dr's advice ends and moms common sense sets in.
BTW anyone who has CFS,Fibro or their kid has it feel free to PM me I'd love to chat with you.
My DD 15 yrs old has CFS, Fibro, Central Pain Processing Disorder and a few other things. A dr can believe in CFS but not always give the best advice in every situtation that is true with any dr. I learned years ago there is a fine line difference where Dr's advice ends and moms common sense sets in.
BTW anyone who has CFS,Fibro or their kid has it feel free to PM me I'd love to chat with you.
You're a much nicer person than me, I would have called the secretary back and told her that due to what the doctor said I decided against disney and was taking my son up mount everest instead! 
. Only you and your family know what is realy appropriate for your son. What kind of life all of you would have if you never did any thing. Go with your gut and have a good time, (AND GET ANOTHER DOCTOR).
. Only you and your family know what is realy appropriate for your son. What kind of life all of you would have if you never did any thing. Go with your gut and have a good time, (AND GET ANOTHER DOCTOR).
leise
Mouseketeer
- Joined
- Mar 29, 2003
Sarah Jane, I hope you have a great holiday. I bet the consultant has never been to WDW in his life, so has no idea what is involved. You could go on a beach holiday, or sit by a pool in Spain, and your son could exert himself more than he will at WDW. I think in the UK there is a great deal of ignorance about WDW from those who have never been. People think it's like going to Alton Towers every day for two weeks , where you constantly queue, have no breaks and take your kids on loads of thrill rides.
And I can just imagine the secretary; did she have that special tone of disapproval and judgement that some medical secretaries do so well?
We've taken our two boys to WDW twice now, when they were 3 & 18 months, then when they were 5 & 3. The key to success with any child that age is to do it all at THEIR pace, and build up the time in the parks slowly. The other issue we have coming from the UK is the jet lag. They get up at 4am for the first few days and fall asleep at 5pm regardless of where they are! LOL we have to plan for that!
Hope you have a great time, sure you will, and all your kids will love it!
I hope you have a great holiday. I bet the consultant has never been to WDW in his life, so has no idea what is involved. You could go on a beach holiday, or sit by a pool in Spain, and your son could exert himself more than he will at WDW. I think in the UK there is a great deal of ignorance about WDW from those who have never been. People think it's like going to Alton Towers every day for two weeks , where you constantly queue, have no breaks and take your kids on loads of thrill rides. And I can just imagine the secretary; did she have that special tone of disapproval and judgement that some medical secretaries do so well?
We've taken our two boys to WDW twice now, when they were 3 & 18 months, then when they were 5 & 3. The key to success with any child that age is to do it all at THEIR pace, and build up the time in the parks slowly. The other issue we have coming from the UK is the jet lag. They get up at 4am for the first few days and fall asleep at 5pm regardless of where they are! LOL we have to plan for that!
Hope you have a great time, sure you will, and all your kids will love it!
NewEnglandDisney
Just My Opinion. Your mileage may vary.
- Joined
- Jul 4, 2004
A bad mother for trying to give your child the most normal life possible and taking them to the happiest place on earth? NEVER.
Sounds like you need a new "consultant". This one obviously, no matter what his pedigree, doesn't have the sense to work with children.
Good luck, and I hope you and your WHOLE family have a magical time!
N.E.D.
Sounds like you need a new "consultant". This one obviously, no matter what his pedigree, doesn't have the sense to work with children.
Good luck, and I hope you and your WHOLE family have a magical time!
N.E.D.
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