what to do with a DH in denial

[jenn-n-okla]

I am having a hard time here as it is now down to 12 days till we visit WDW. My DM and I took DDs last year alone. DD6yr has a rare lung disease yet it is "invisible". She does need oxygen when in the Florida heat and humidity. My issue is my husband is still after 4 1/2yrs of knowning what is wrong with our daughter, in big time denial. My DM is again traveling with us for this trip. We had such a wonderful vacation last year. But this year with my husband coming along I am just getting that sick to my stomach feeling that there will be huge tension over the whole oxygen and GAC use. He feels us even asking for one is an abuse of the system. "You will do everything you can to make her look different" ....he said this to me on more than one occasion.
Yes I am venting here. But do any of you have any ideas for me to use to help get through this tension and denial?

 

[mrsksomeday]

It sounds like he has not accepted her health issues. The point is not about "making her look different", it is about accomodating her medical needs. Oxygen is to help her breathe and live, the GAC helps provide assistance and accomodations to help your daughter have a magical time.

The first thing he needs to do is accept that she has these issues, then go from there. I don't think he wants her to suffer or have problems when she is there. Please don't let his hang ups stop you from getting the GAC, she needs to have it and you know and understand.

Many people that have a family member with a disability have to become an advocate for that person, it is sad that you have to become and advocate for her to your husband. Do what you think is best, you have been there with her before. You can vent to us any time you need to .

 

[jenn-n-okla]

Thank you for the hugs, I really needed them today.
I am still going to get the GAC as having been there last year I know we will need it. I just wish some pixie dust would fly by and take the stress I feel away. I just keep closing my eyes and picturing the beautiful castle in my mind.

 

[bookwormde]

It may be to short a notice but how about “pretending” that you need a doctors note to get the GAC (YOU DO NOT NEED ONE AND WDW WILL NOT EVEN LOOK AT IT IN MOST CASES) get your child’s doctor to write a description of what the potential health impacts are of the weather and other factors such as exertion level, extended line waits etc, and specify appropriate medical supports and environmental and facility accommodations which would be needed.

Sometimes when things are in black and white from a “professional” they are more readily accepted.

bookwormde

 

[Cheshire Figment]

It sounds like he has not accepted her health issues.

Many people that have a family member with a disability have to become an advocate for that person, it is sad that you have to become and advocate for her to your husband. Do what you think is best, you have been there with her before. You can vent to us any time you need to .

It may be to short a notice but how about “pretending” that you need a doctors note to get the GAC (YOU DO NOT NEED ONE AND WDW WILL NOT EVEN LOOK AT IT IN MOST CASES) get your child’s doctor to write a description of what the potential health impacts are of the weather and other factors such as exertion level, extended line waits etc, and specify appropriate medical supports and environmental and facility accommodations which would be needed.

Very good points, and bookworm that is a wonderful idea which may work, especially if she can get her husband to pick up the note (and when calling about it, tell them you do not want it in an envelope).

 

[of2dbeach]

My family still dosent all except that mike is Autistic. it is sadbut they dont. not sure how to get your DH to accept it but it does take time there are greiving process to go thru. i used to councel newly diagnosed parents with autism .Its like part of him has died along with the child. all his hopes and dreams for her has died as well. There is a great poem called "Welcome to Holland" please look it up if you havent read it. print it and put it on the fridge . grab some tissues read it and cry your eyes out. take special time to be alone with Dh and have him read it also or you read it to him if he will let you. you can help him along in his grief, show him that even though you accept what has happend you arent thrilled with the outcome either.. but you must move on past it not just for her sake but for yours as well. My dh is my rock and I am sure yours can and will be also if you just tell him what you need from him . men are very macho and proud . I seen my big burly hubby lock himself in the room and cry at times because Mike talked to him or helped him with something. i dont think using the GAC has ever gotten us any more noticed using it then when we didnt maybe at small world because your going down the ramp while others are comming up. But then again Mike can walk and dosent look "diffrent" . i think one of the hardest hurdles is to say yep she is diffrent but this is the only way i have ever known her anywas. God gave her to me for a reason and god will never give you morethen you can handle. i know 3 out of my 5 kids are Special needs . just remeber your there for her and I am sure you will have a great time. try to iron out the issues and fears with hubby before hand. feel freeto send me a message if you want to talk
extra warm hugs !!
Tonya

 

[darthtatty]

thats a great poem
when i take my son to the hospital there is a poem in cross stitch, its very good.
i must write it down next time i go.

 

[Ms_Butterfly]

Does hubby go to the doc app'ts at all? I know in many families it is mostly the mother who takes the kids while the father works, so the father may not have much experience with hearing from the docs. Perhaps you can have your daughter's doc have a good conversation with your hubby about her needs and why she needs them.

It is hard for family members to accept that their loved ones aren't "perfect", especially parents who most likely dreamed of hopes and wishes for their kids long before their kids were conceived, perhaps even long before they even met their spouse.

Another option would be couples' therapy from somebody with experience dealing with denial of a loved one's health issues.

Whatever you do, do it for your daughter's health and not your hubby's wants (i.e. don't not get the GAC or oxygen when your child needs them). And be thankful that you have been giving wise understanding of your daughter's needs - not all mothers are like that!

 

[zumbergc]

I would have to think it has to do with denial. I had a family situation where my dad and brother were in denial for a long time.

They weren't at all the dr appointments, w/ all the meds, etc, and asking questions, etc at the apointments, doing lots of looking on line, like i was.

I think men need hard facts. Reports, summaries maybe your specialist sends to your regular doc. Or a sit down with the doc to just inform and educate your husband, or what someone else mentioned about what accomodations she would need at disney.

The other thing is denial, like what someone else mentioned. Its the first thing that hits you when your faced with something you don't want to deal with. Maybe they need some help in re-focaussing on what your life with the child is going to be with from you. Maybe focus on the positives first, but of course she has medical issues, which he shouldn't be denying. He may need help in accepting it.

One thing to remember is, some people are glass is half empty or glass is half full, so one can make accepting some things harder.

 

[urgoinagain?]

I'm sorry I don't know the whole situation, but from my experience with my husband and daughter I know that he wants her to have the same treatment as any other child. He wants her to feel like every other kid. Maybe he is worried about how her condition affects her? Maybe you can get the GAC and have your oxygen on hand, kind of "just in case" we are prepared. My daughter does well in Florida too and my husband also thinks we don't have to bring her equipment "she'll be fine". I don't argue or get upset, I just tell him I'd rather be safe than sorry. (maybe you can show him how much it would cost if you had to get emergency supplies?) After our first few trips without a GAC my husband now takes my daughter to get one! I hope you have a wonderful trip, don't stress too much kids can sense when there is something wrong.

 

[BeckyScott]

My DH was in denial for quite a while too. But with DS's autism, it wasn't quite so noticable when he was a toddler, it's become more apparant as he's gotten older. And his asthma and all that, DH had to do the ER run more than once, so he figured that part out.

What I did want to tell you, been there done that, is because of your DH's denial, I am pretty sure you are taking all the stress on yourself. You are doing the doctor appointments, the insurance, the meds, the research. And you need to remember-- I love this analogy-- to put the oxygen mask on yourself before you help your child.

I took the full brunt of DS's diagnosis. I felt guilty because in his case, who knows, maybe I did something. I felt like, because DH was in denial, it was all on me to make sure he got the right therapy, the right doctors. I did all the reading and learned all the acronyms. It was going to be all on me to "fix him" because nobody else believed it.

Eventually DH did climb on board, although I am still the one doing most of the labor.

And six years after a diagnosis, DS still has autism, although he has made great strides. And I have ulcerative colitis and anxiety attacks. That's what happens when you forget to take care of yourself. Don't forget to take care of yourself.

 

[disneydeb]

my dgs has autism, and my ex-sil use to tell my daughter to get off the handicap bandwagon because he did not want a retarted son, well needless to say he is now my ex-sil and good riddence to him, i always went to wdw with them, and to the doctors appts with my daughter to help her with dgs, ex -son in law was in total denial, and my daughter and gs are much better off without him, it got to the point where he started getting abusive to my daughter and grandson when i wasnt around, i got them out of that situation pretty darn fast, remember you are that childs mother and its up to you to protect your baby, you should tell your husband who cares if it looks like the o2 is abusing the system, at least your baby can breath, i bet there are a lot more understanding people out there than you think . you make me shutter reading your statements about the tension, when my dd was with the idiot she was always walking on eggshell and sick to her stomach too.it wasnt until the day she caught him laying a hand on the baby that she finally admitted HE had the problem and got rid of him,

 

[disneydeb]

im sorry i didnt mean to sound so harsh, just reading your letter brought back terrible memories for me, i hope you have a truly magical vacation

 

[PammyJJane]

Well I'm sorry that your husband is adding to your stress by being in denial, but none of us are perfect and he's just not dealing with it as well as you are. When dealing with him, you should stay calm and try not to argue with him. It won't do any good because chances are he knows you are right anyway. He's just wishing it away, really...it's his way of dealing with it by not dealing with it.

I very much like the 'better safe than sorry' approach mentioned; sort of soft-pedaling it - that might be a very good way of handling him and, I think, many men (no offense to any men intended). You need the oxygen to be handy - better safe than sorry - so you need the GAC because of the equipment. I mean, surely he's seen her have difficulty breathing in heat and humidity. Lots of completely healthy people have difficulty in that situation. Surely, he can see that it's just not worth the risk...just in case.

Another option would be to straight out say something like "you are in denial about this, and I'm sorry that this is so hard for you, but I won't risk our daughter's health because of your emotional difficulties. If you are right and I am wrong, there will be no long-term consequences. If I am right and you are wrong, the consequences of being without oxygen could be very serious." and then just not discuss it further. You might invite him to stay home if it will cause him pain to see her with the 02, as kindly as you can.

Worst-case scenario - as unpleasant as things might be, you, your daughter and your mother can still have a wonderful, magical time. Lots of smiles and laughter; try to keep a sense of humor. You're venting here and that's wonderful; get it out of your system. You know your husband and how to best handle him. Develop your plan now, stay calm, and have an absolutely warm and fuzzy, fairy-dusted, magical time!