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Are you'r DH/SO's in touch or in denial?


Forum: Children with Special Needs

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  #1  
May 22nd, 2009, 08:00 AM
Daisyfields's Avatar Platinum Super Mega Mommy
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My DH, although he says he gets the intensity of our children's handicaps, he does stuff that states otherwise.

For instance, Teighan, not Cooper who has all the problems, has an eating problem. Sensory & delayed, eating at a 7 mos. old level and he's 17 mos. Only eats stage 2 Gerber & drinks Alimentum out of a sippy cup. Has allergies etc.

Last night I made Strawberry Shortcake w/ Cool-Whip & sponge cake. My DH was sitting next to T.T. & he proceeded to give him Cool-whip (DAIRY) I said "what are you doing? he's allergic to that!" he said "it's just a little bit"... "THAT'S ALL IT TAKES!!!" Teighan took it, and then he tried to give him more & instead of it being the Cool-Whip, he decided to give him SOLID SPONGE CAKE!!! He forced it in his mouth, Teighan, w/ his sensory issue, started to tear up & gag... which is what he does w/ ANY solid that you try. He started to choke & I kept saying "what are you doing?" he said "he's fine"... and said "just eat it Teighan"... I said "he's going to throw up or choke, take it out!" as I told him this & my DH was ignoring me & I started to get up from the table to help Teighan, he projectile vomited all over the place. ***?!!? I said "what the _____ is wrong w/ you? I told you!" and gave some more choice words. He said "why do you have to curse?" uh... I dunno... maybe cause I warned him? maybe cuz he's an idiot? maybe cuz this is COMMON KNOWLEDGE about Teighan? maybe cuz as a result of his poor decision Teighan got sick all over the place & now I was watching him cry? Seriously... I was so angry.

That really angered me. On one side, I was glad he puked up the stuff cause that meant the dairy he gave him came out of his system, otherwise he'd be covered in hives & sick all night. On the other hand, I feel bad b/c I am his mother & my dumb DH was ignorant to listen to me. He is so selfish. I mean, I would LOVE for Teighan to eat REGULAR foods, I would LOVE for Teighan to have dairy & be fine, but that's not the case. Why? why would someone do something when you know it's a bad outcome? Just makes me VERY irritated & angry.

DH does that stuff w/ Cooper, will let him try to walk stairs & Cooper can't balance & falls or puts him in situations that could hurt him more. I am not trying to keep my son in a bubble but I know what he can & can't handle & I tell my DH this but he DOES NOT listen to me. Jesus, what's it going to take?

GRRRRR......

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  #2  
May 22nd, 2009, 09:07 AM
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My DH is in denial, although not to the point yours is. His thing is more downplaying or lack of accepting everything. Last night I told him about Ava's casting appt, his response was "She doesn't need leg braces, she'll catch up when she's ready." He's just not ready to accept the CP yet.

It's really hard when your DH isn't taking things as seriously as he should. I makes us feel like we're shouldering it alone. I'd have your DS's Dr or therapist talk to your DH about how serious these things are. ((Hugs)) I'm sorry hon.
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  #3  
May 22nd, 2009, 09:24 AM
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(((HUGS))) I agree-since you're not getting through to DH, maybe a doctor can have a long talk about all of the problems and what they mean, how to deal with them, etc.

DH accepts it, but is almost TOO positive, and I think that he misses about half of what I tell him. He's listening, but he's also thinking through it and not always hearing the "putting-the-pieces-together" parts. I hate being the person who has to go behind him to retell everyone what's going on. For example, when Milo was "precoded" in January and moved to the Special Care Unit, DH just told everyone that they move little kids like him to that unit. WHAT?! I retold him, and he told everyone then that Milo was moved because he needed to have his eating monitored. Ok, that's part of it, but remember the part when no amount of oxygen was bringing his sats above 64, his heart rate was over 230, and his whole body was purple and he was vomiting? DH just sort of hears one thing and concentrates on it. He's very intelligent, so it frustrates me that he can't get this down. He tries and wants to, though...it's just that he's at work and can't be at many appointments (most).

He still forgets that Milo can't have honey yet, that Milo doesn't eat solids so even crumbs are difficult, and that he can't use Q-tips in the kids' ears, etc...basic parenting stuff, he forgets. DH is smart, but seems to lack common sense. No, I'm not being mean. He understands this! LOL! His dad was a doc and was exactly the same way! They can figure out almost anything, but there's a lack of common sense, doing unimportant things the long way, etc.

I'm not complaining! I think that it's sort of funny. Really, DH is VERY involved, does as much as he possibly can, and doesn't think of it as "Jessica's job." I like that. I'm very lucky.

Still, sometimes I feel like I'm having to raise him, too! (DH's child-rearing is long and involved, and totally makes sense why he's this way, so it's just a matter of time, I guess...)

Sorry...I guess my answer is that he's as in-touch as he can be, but there's a way to go. He's in denial about the severity a lot of the time, but that could be my fault. I try to present the problems with possible solutions, and he just trusts me with it all.
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  #4  
May 22nd, 2009, 09:59 AM
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I am sorry you are going through this. I think sometimes our significant other's do their own thing, special needs kids or not. My DH isn't as good with all Carter's issues, but he's not with him the extent I am. If I tell him Carter can not have something though, he would know better than to give it to him.

I hope you guys can sit down and have a calm talk and work things out.
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  #5  
May 22nd, 2009, 11:01 AM
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I'll never forget the day that Cooper had his 1st surgery as an infant, and they brought me & my husband into "the room"... and begun telling us that he was deaf. I remember thinking how the world just fell on top of me, I was suffocating. After those words, I didn't hear much of what the surgeon/doctor had to say, but I do recall DH w/ tears in his eyes saying "what do we do to fix him?".... to this day, my DH doesn't really "get" that our children have issues/SN's, he thinks that they will all "catch up" and get better w/ time. He's been to several doctor's appointments, it isn't that, he just doesn't want to accept it, I think when you acknowledge that something "is" in fact wrong, you are admitting the truth, and sometimes as humans/adults, we're not ready for it. I've taken it in regardless of how hard it has been.

I remember one appointment in particular for Cooper, the audiologist told my DH that he HAD to come to the next appointment to learn how to handle Cooper's hearing aids. He never showed up , he said he had to work & just never showed. The audiologist said "you have to learn how to do this"... when DH got home, I sat him down & went through all that I had learned. Never, not even once, has he ever attempted to put the hearing aids in Cooper's ears. He said "I can't do it & it's not like you're not around all the time, he's fine"... my family, still has the same attitude. It's like "okay, you think that a person should go w/ out hearing all together b/c you can't be bothered w/ the details of inserting Cooper's hearing aids in?" because it was a tedious thing & b/c he was so small...you had to watch him literally 24/7 & take the aids out in the car etc., b/c the aids are choking hazards. Cooper doesn't wear aids today, he stopped at 2, but he still has significant hearing loss. He hears like being under water which is why he's so delayed in his speech.

Sigh... that's just a small example of my husband's denial. Which I try to explain but my DH is in denial about my disabilities. He's very like "just go lift weights"... meanwhile my bones & joints would tear. He thinks that some protein powder & weight lifting should "fix" it all. That it's all in one's head.

No matter what, I don't think he'll ever "get it"... his brother (my BIL) has Aspergers Syndrome. He's NEVER been accepting of it, even my FIL is the same way w/ his own son, just don't want to come to terms w/ it. Then you have my MIL (BIL's mother), she is overbearing & has helf her son (BIL) back, he's 40 & has never had a girlfriend, wont drive, he works pushing carriages at Wal-Mart & all his funds go into my MIL's bank act., he never sees it. He doesn't even realize that he has money I don't think. I feel bad. I've laid into MIL too, same w/ my FIL, but I think it's a family thing, they don't want to accept it or try to protect too much.

My family is truly in the most denial ever. They can't & wont be bothered by Cooper's SN's or Teighan's eating problems. When I have to leave the kids w/ one of them I "crindge" b/c I know it's not going to be pleasant when I return. They just don't want to deal w/ it. I think b/c the boys (and myself) don't look "deformed"... we're not in wheelchairs or require 24/7 oxygen & what not. Because it's not visible to the eyes, they don't understand or want to understand it. Yet, now that I am walking w/ my cane more & more, I think they're starting to get how bad I am doing physically.

I don't know where this all came from. I am just frustrated w/ the denial lately & DH doing that last night just really upset me.

Thanks for listening ladies.
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  #6  
May 22nd, 2009, 11:14 AM
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My DH is supportive. I think sometimes he thinks I am "overreacting" to Justin's sn's. It doesn't help that my MIL brainwashed a lot of crap in to his head because she is ignorant.

My DH would NEVER force something in to any of the kids mouth or give them something I said they couldn't have.
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  #7  
May 22nd, 2009, 12:18 PM
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kinda a bit of both. he has accepted the diagnosis and treatment but won't do any of them meds and at every single scan he says they will be normal scans and that even with a high reactivation rate, he thinks we never have to worry about reactivation once he hits remission. Hello, fact is 46% chance it will come back AT LEAST once. And that chance may be higher because he still has active disease now.
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  #8  
May 22nd, 2009, 12:21 PM
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Quote:
Originally Posted by Tara0906 View Post
My DH is supportive.

My DH would NEVER force something in to any of the kids mouth or give them something I said they couldn't have.
Ditto.
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  #9  
May 22nd, 2009, 04:23 PM
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he doesnt always get ALL of the details, but he knows as much as he needs to in order to keep my kids safe . I trust him completely with both of them.

i'm sorry that others dont have the same experience
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  #10  
May 22nd, 2009, 04:49 PM
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while my DH has accepted Joey's diagnosis (which there are no major outward signs of) he does not accept the SN's of my sister (whom I care for). She is in a wheechair with nech, head, and lateral support, and DH swears she should just "get up and walk". He also chooses not to accept our daughters speech delays or hearing issues (which we have been told is "resolving" but that its like she is hearing through water) so when I tried to get a good IEP with our current school district, they called to schedule and DH told them not to worry about it she had improved. Yea, she has improved some but she still talks like shes 2 and she's nearly 4!
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  #11  
May 22nd, 2009, 05:16 PM
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Quote:
Originally Posted by docsmomma View Post
while my DH has accepted Joey's diagnosis (which there are no major outward signs of) he does not accept the SN's of my sister (whom I care for). She is in a wheechair with nech, head, and lateral support, and DH swears she should just "get up and walk". He also chooses not to accept our daughters speech delays or hearing issues (which we have been told is "resolving" but that its like she is hearing through water) so when I tried to get a good IEP with our current school district, they called to schedule and DH told them not to worry about it she had improved. Yea, she has improved some but she still talks like shes 2 and she's nearly 4!
*GASP* Not a judgment on your DH AT ALL, but OMG! Do you mind if I ask how he acts toward your sister and daughter?

Really, I DO trust DH completely. If he's unsure, he checks with me, so it's all good in the end. I can't imagine him going THAT far with his optimism!

Side note-I'm glad that your daughter is improving, even if only a teeny bit!
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  #12  
May 22nd, 2009, 07:51 PM
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((HUGS)) ladies.

DH is not in denial. He is aware of what's going on. If he's not sure about what to feed Luke (bottle vs. baby food) he calls me at work. He called one day to ask what I wanted him to do b/c Luke was due to eat lunch but was fussy & acted like he wanted a bottle & take a nap. It's a concern because Luke had feeding issues as an infant & DH still worries. We were counting milliliters when he was first born due to weight gain issues. It's resolved but DH still worries that he's doing the right thing in that area. He can tell you about all of Luke's medical problems, procedures & hospitalizations.

His mother on the other hand does not pay attention. He has to have back support still when you carry him due to him being prone to cervical fractures (a risk for children with DS) until his head control improves. She has been told plenty of times. She carried him from the dining room to the kitchen in one arm while carrying a tray in the other. He was wobbling all over the place. Needless to say, she did not carry him the rest of the day & DH told her she had to be more careful. The day we found out he had to have tubes placed in his ears, we called to give her an update on the appointment. Now, it had been a very rough few months for us with his open heart surgery & such. Her response was "Stacy, you knew he was going to have problems when he was born" Minor procedure, I know. But, it's my child & irregardless of what it is, it's a big deal because it's my child going through it. And, I don't care if you do know your child has medical conditions/problems that are going to require intervention at any point or not, it doesn't make the fact any easier. Geesh.

Sorry to go off on a tangent, I get a little hot about that area of our life sometimes.
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  #13  
May 29th, 2009, 01:05 PM
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denial!!!!!!!!!!!! the dr or specialist is always wrong to him.
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  #14  
June 1st, 2009, 12:43 PM
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My own mother always tries to compare my situation(s) to her dogs. She has a dog w/ lots of "problems" (allergies)... so she tries to make her dog issues as serious as my DS' medical care & his SN's. DRIVES ME BANANAS!!! Then to add, I have my grandmother (who raised me as her own) & she never wants to hear the "real deal" & if I try to talk to her, she'll say "glad everything is fine & everyone's fine"... It's like "hello? anyone home? did you not just hear that we have a child who has seizures & is on yet ANOTHER surgery?" They don't want to hear it. I guess I've come to the conclusion that until you have a situation that is like this, you don't get it, so why bother talking to them at all?

My DH "has" to know though, it's not an option. For him he doesn't want to believe that his child is sick or has problems. He has a brother who has a medical problem that has him MENTALLY delayed & it's bad. I think he compares the 2 but they're not close at all. Plus, his brother was recently diagnosed w/ in the past year.
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  #15  
June 1st, 2009, 04:17 PM
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Quote:
Originally Posted by iamkc View Post
*GASP* Not a judgment on your DH AT ALL, but OMG! Do you mind if I ask how he acts toward your sister and daughter?

Really, I DO trust DH completely. If he's unsure, he checks with me, so it's all good in the end. I can't imagine him going THAT far with his optimism!

Side note-I'm glad that your daughter is improving, even if only a teeny bit!

I don't mind at all, especially since I'm frustrated with him right now.

With my sister he chooses to believe she is blowing everythign out of proportion (and I admit some of the time she does) but he also doesn't know the full scale of her medical issues. She has Ehler Danlos, SPina Bifida, Prolonged QT, Addisons, dysautonomia, and a variety of other issues stemming from each of her primary dx's. He pretty much ignores and avoids her.

With our daughter, he babies her. He doesn't "get" that she is not speaking at her age level and seems to feel she doesn't need help. I work with her each day myself and I have been working on getting speech started through our doctor. He can just deal with it. He gets mad at me when I tell him he needs to stop giving her everythign she wants just because she cries and points (and he spoils her too) and says "am I not allowed to let her be daddy's princess?" UM, not to the extreme your going to, no. She's going to be spoiled rotten (oh wait, she already is!) and throw fits when she doesn't get her way and I have to undo it every single day... (and this is the exact reason I am mad at him right now, he gives in to the demands of a 3 yr old)
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  #16  
June 1st, 2009, 08:46 PM
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I'm pretty fortunate, my DH is usually helping me research on issues with Kyle and how to help with his development. We know little else, given that he was our first - and such an intense amount of issues right from the start.

The only thing that caught him off guard, was hearing the actual words, "Your son has cerebral palsy". It wasn't a surprise to me, I expected that. I had talked with DH about it at length quite a bit over the 2 years we were being bumped from waitlist to waitlist for our Neuro eval. The therapists were even treating him as such - but I think it takes your breath away hearing it officially, because at that point you stop guessing, you just have to accept it. It took him a good week to really come to terms with it.

All in all, I'm pretty fortunate. My DH works from home 3d/wk, and has since Kyle came home from the NICU (he worked from Ronald McDonald House full-time, while Kyle was in the NICU - 6.5mo). So he's always been right there, and Kyle was a two-person job that first year especially. We had to work in shifts - and we didn't have a nurse helping us, outside of the weekly weigh-in/check-up in home.
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  #17  
June 3rd, 2009, 12:00 PM
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I'm sorry that he acted like that. ((HUGS))

My daughter's father was and still is in denial about her medical condition. She has Sturge Weber Syndrome. In fact he was in such denial, that my daughter suffered a grand mal seizure while in his new wife's care, she didn't give the rescue medication, and she ended up in the hospital for 3 days in another state.

I think that men feel helpless, or guilt that they're child isn't "normal" They have a harder time adjusting then we do.
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