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Post by lauraryan10 on Aug 16, 2005 13:22:36 GMT -5
Hello, My name is Laura and I am the proud mom to 3 beautiful children. Holden is 6, Hayden is 2 (DS), and Jacie is 1. My problem is my dear husband. We all love him dearly but I do believe he is still in denial. Not to complain BUT...I work full time (3 days a week for 12 hours) and then I do everything for the kiddos. I take Hayden to all his appointments (and there are alot), attend all his therapy sessions, etc. Half the time my husband has no clue what is going on with Hayden. I have taken Hayden to 3 different procedures where he was placed under general anesthesia without him (thank goodness my mom went). You get the picture...My husband loves all my children dearly but all he wants to do is play with them. When I try to talk to him about Hayden and his "condition" my husband makes excuses for things he needs to go do. I have talked to him about this many times and he says he will try and be more involved in Hayden's medical care but I have seen no change. I have told him on many occasions what it is we need to work on with Hayden and yet none of it gets done when he is with them. He does help with the Down Syndrome association we are associated with when I pester him but he will never ask anyone at his work, or friends for donations, activities, etc.....Thanks for letting me vent but does anyone have ANY suggestions? ??
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Post by Connie on Aug 16, 2005 13:34:55 GMT -5
Laura, HUGS girl....I hate to say this but I don't see this as being a DS thing but more of a HUSBAND thing!!! I am mom to 4, Griffin 9, Gray 7, Collin 5 (DS) and Lauren 3. I also work full time and I am also in charge of all medical needs for all 4. Every once in a while he will take one to the doctor but I have to say....I can't do this you have to take "little Johnny" to see the doctor today but I have to make sure it is a doctor appointment that is not going cause any damage if he forgets to tell me something that the doctor said!!! A couple of years ago Collin had been admitted to the hospital (that was 60 miles away from us) for Kawasaki Syndrome. The child was very very ill. Well I stayed the night with him and my DH came to releive me so I could go home take a shower and pick up 2 of the others from school before coming back down to stay for the night. On the way home before getting to take my shower (grrr... I don't do well with out showers) he calls tells me to come back now as they are releasing him from the hospital RIGHT NOW!!! The doctor came in right after I left and started asking him questions....he actually told the doctors well....you really need to talk to my wife because she's the one that handles all this stuff!!! Collin should not have been released and that's when I learned that if it's important medical things.... I have to handle!!! But, with that being said....Michael is a wonderful dad and very involved with all his children. POINT OF POST!!! IT'S A MALE THING!!! ;D CONNIE
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Post by ALLISA on Aug 16, 2005 13:52:17 GMT -5
I have to agree with Connie it's not so much a DS issues as a relationship issue....though I don't think ALL men are this way....I think they have been trained to be this way because of their upbringing and then we wives allow them to continue because as Connie said....it's just easier and less stressful to do it ourselves.....hence.....
onto one of the MANY reasons I am now divorced.
All kidding aside, however.....it isn't fair for you (or any of us moms) to shoulder ALL the reponsibilty....if you feel that he will continue to fall short with doc appts & therapists.....at least make sure that he is "picking up the slack" somewhere else on the homefront duties. Otherwise you can't help but feel resentful and unappreciated. Dads have to be around for ALL the stuff.....even the BORING MUNDANE tasks.....not just to "play". As far as asking friends or collegues for donations.....that might just be a "pride" thing....he probably wouldn't want to ask them for anything.....not just a DS cause. Good luck....and as a last bit of advice....I do believe in marriage counseling.....
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Post by Kristen on Aug 16, 2005 14:08:08 GMT -5
I can see him not soliciting people at work. That is understandable to me completely. Howeer, he does need to become more informed about what goes on medically/therapeutically so he can at least hold a decent conversation with a doctor. Have you asked him to go to the appointments? Have you TOLD him to take such and such days off? How about when you come home from something you tell him every last minute detail about it so he can't beg off with not knowing what's involved. He might not be in total denial he may just be - and this is a often misunderstood word - grieving. You go through alot of phases as you well know as you venture through all of this, but sometimes living it helps you through it more than remaining on the sidelines where it is "safe". I don't know, but you might want to have general discussions with him about how he feels and see where that leads you. My DH almost wants to do TOO much with the therapy and medical appointments - I have to tell him I can do it myself sometimes! WIth some things I take him with, though, because I know there is a long wait or something like that involved.
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Post by Jessie on Aug 16, 2005 14:11:44 GMT -5
I agree - IT'S A MAN THING!!!
I pretty much handle everything as well. Fortunately or unfortunately, depending on the task at hand, because I'm Jason's stepmom and have no legal rights to him, Brian has to stay involved with most medical issues, State services, etc. If I do ever adopt him, I know that will change in a New York minute - I will really be doing everything!!!
I have to admit that part of this is my control-freakish behavior, so I absolutely have fed into his natural behavior to let me take over and get stuff done. One doctor's appointment that Jason had not too long ago, I couldn't make it, so I typed up a list of questions for Brian to ask the doctor. Would you believe that there were a couple of questions that got missed? What's up with that! LOL
Brian does talk about Ds, etc., etc., there is no denial on his part - BUT - I do feel that he sees Jason as his son first and Ds second. Which is the way that it should be. But, I think this leads to his natural-guy attitude of not getting too involved in all the other stuff that moms tend to take care of.
Jessie
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Post by bstrong on Aug 16, 2005 14:13:39 GMT -5
Laura, I would have to agree with Connie. I help my wife with the kids by feeding them, giving them baths, and playing with them. However, when it comes to medical needs my wife is the goto person. I help out the best I can, but she spends more time with the therapists and doctors.
I think it is a guy thing, not to make any excuses, but like Connie, our daughter was in the hospital many times, once with pneumonia. I stayed with our other two for a couple of days but during those days I relieved my wife of duty so that she could go home and take a shower. When it was only me and Amanda at the hospital I was overwhelmed by the questions the doctors were asking me. I had to call in my wife for help.
My best advise is to tell your husband how you feel, calmly, truly how you feel, get specific.
Stay positive.
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Post by momofrussell on Aug 16, 2005 14:33:58 GMT -5
Laura, I would ask youself this... was your husband this way prior to the birth of Hayden or was this all aquired after the birth of Hayden. I would agree with the others if this IS who your husband is and was this way even prior to the birth of Hayden. Just a playful kinda guy, no hassles. But... if you really think he aquired adversions to his child having a disability, that is a whole other issue. Although they say if your marraige is already healthy, a child with a disabilty shouldn't change it... it can in some instances. I know a couple moms who are now not married since the birth of their child with a disability. I am NOT saying you are headed for divorce... just wanting you to maybe think of if there was some CHANGE in your husband after the birth or this has always been who hubby was but you never noticed until you were lugging Hayden around everywhere. I think if your husband was always like this, you might have to meet in the middle somewhere. Maybe realize this is who he is and just convey to him in some nice way that you REALLY need some middle ground. If you think it's some adversion that happened after the birth and you really feel he has issues with taking care of Hayden, then I would seriously get to the bottom of it before you start resenting him and he resents the child. Either way... counseling is always a wonderful option and they are they not just to help vent an place blame LOL.. they are there to give wonderful ideas on how to meet in the middle and/or cope with having a child w/disabilties. Because lets face it, even those with the most wonderful heathliest of marraiges still feel the strain of raising kids with and without disabilities. I also would express to your husband that , God forbid, something EVER happened to you, but he needs to be able to handle your children in general and Hayden's need if you get really sick, incapacitated or sadly, you die. That is VERY important. Not to sound morbid but we all don't think of these things sometimes. And it has to be thought of especially if you have a child w/medical needs. I have to say (sorry to toot my own horn a bit ) that my husband has done plenty of doc appts without mommy. He is pretty in tune with Russell and even though I do most of the doc appts now that I don't work and he is the bread winner, he could handle it just fine. My husband and I are a good team and that is the way I need my marraige.. but again, I knew it was going to be like this prior to even having Russell. Good luck!!! Always stay nice to him.. remember you need each other!!! Hugs! A.
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Post by lauraryan10 on Aug 16, 2005 14:59:28 GMT -5
Hi All, Thanks for responding. I think most of you are probably right, it is a man thing. However, he did not act this way when Holden was born. Holden did have medical problems at his birth and DH was always there and very helpful. We learned before Hayden was born that he had DS. Ryan was very supportive throughout my pregnancy. But after Hayden came home he was more withdrawn. Then Hayden was hospitalized with signs of Transient Leukemia and an infection. Hayden was placed in the hospital 1 month after the birth of my daughter. I stayed at the hospital with Hayden and he stayed a few hours at the hospital a day then went home (my in-laws were keeping the baby). From that point on he was less involved. When my older son was hospitalized for asthma earlier this year, again I stayed at the hospital. He keeps the kids on the weekend while I work and he always talks about how overwhelming it is to keep to small babies. Most of the time he drops them off at my in-laws. Maybe it is just the stress of having 2 children under 3.....
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Post by Connie on Aug 16, 2005 16:25:19 GMT -5
Laura, So you don't feel all alone in that boat....I'm right there with you!!! I went away to a conference for 3 nights and my DH left our 2 little ones with my mother, now in his defense she did offer but still!!!
He has never had to deal with all 4 of them by himself for more than 1 night!!! I honestly really don't think he could.... Needless to say we have had many of conversations with me asking what would you do if something happened to me? How would you do this on your own? Connie
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Post by momofrussell on Aug 16, 2005 17:00:24 GMT -5
Laura, since you mentioned the medical issues and hospitalizations, do you think maybe he has a fear of loss?
A.
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Post by dannysmom on Aug 16, 2005 18:17:44 GMT -5
Hi, I know alot of women who feel like you do. I have read the postings and it seems like you got alot of good advice.
One thing that I kind of disagree with is the phrase "man thing". Men are responsible for their actions just like we are. Being withdrawn or lack of initiative with the kids isn't a "guy" thing. It's a "person" thing. I would have to say if otherwise he is a great guy and before your son with ds was born he was different, then in my opinion it is his defense mechanism kicking in because of his fear. There have been many times I didn't WANT to talk to doctors for fear of what they might tell me about my child, however, I had to do it. I had to face it. I know we all share in that fear that something could happen to our kids but it is our responsibility to put our fears aside and take care of our kids as best as we can. That means talking to doctors, taking them to appointments, actively participating in their upbringing as difficult at times as those things are. We all have strengths in different areas. Things should be in balance. What works for one family doesn't necessarily work for another.
If you feel your current situtation isn't working for you, you owe it to yourself, your husband and children to find a better balance. Good luck, we're rooting for you.
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Post by mom2nicole on Aug 16, 2005 19:41:36 GMT -5
My husband spent the first 3 years telling me that the doctors were wrong about Nicole. Every time I would talk about it he wouldn't want to. He would say there was no reason for the therapist to come to our house. It didn't help that his dad was in denial along with him. And that Nicole did alot of stuff pretty fast at first. Now he knows she has it and when I get alittle frustrated he will say " you have to understand that she is behind" and I want to strangle him for the first three years. He went to her first visits with the heart and thyroid doctors but not since. He would be the same on the questions because he doesn't know nothing!( we can go to the same doctor appt. and hear 2 different things. ) Michelle
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Post by Chris on Aug 16, 2005 20:24:36 GMT -5
We found out that Sarah would have Ds and a heart defect when I was pregnant. I am a pretty lousy pregnant woman. I was nauseated 24/7 for the first two trimesters and still had problems with nausea in the last trimester. I developed gestational diabetes and had to test my blood sugar 5 times a day and give myself two different types of insulin shots 4 times a day. My husband was very attentive and took me to almost all my doctor appointments. Just recently he told me that he was terrified that the baby and I weren't going to make it. I had no idea he was so scared!
When my daughter was hospitalized with congestive heart failure the first time, they had a horrible time trying to get an IV in a vein. They kept trying and trying and finally got one in her head. My poor husband was terribly distraught and sobbed. This man does not cry! When we left the hospital, I had to put in Sarah's ng tube. My husband refused to help. I had to give her all her meds, change her tube, everything. My husband simply could not handle the stress that comes with causing your child discomfort or pain.
I still am responsible for all her medical care, therapy and school stuff. I keep trying to encourage him to get involved and he will attend therapy and IEP's but brings the newspaper and sits in a corner. He has never attended a workshop, seminar or support group meeting.
Now, on the other hand, I don't think there is a father in this world who loves their child more than my husband loves our daughter. He is the first to jump out of bed to greet her when she makes her little noises in the morning. He has changed more diapers than I have. He spends more time playing with her, taking her on walks, taking her swimming, watching her videos with her, than I do. He thinks about her constantly. I wish I had a father like my husband. My daughter knows she is loved and wanted. She knows she is precious and adorable because of her daddy.
Yes, I think it is harder for men to get involved in the nitty gritty. I also think it is harder for them to face their child's disability. My husband simply sees Sarah as his little girl and he thinks she is perfect. Maybe it is denial and he is able to stay in denial if he doesn't have to handle the medical stuff, the therapies and IEPs. My husband is not lazy, I think handling all the things that are related to Ds are just very painful for him.
At least you know that you are not alone. Most of us are in the same boat as you are. I feel blessed to have such a wonderful husband and father to my child but he is not perfect. All of us that are in the same situation can only encourage our husbands to get involved with the not so fun stuff.
Chris
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Post by Jessie on Aug 17, 2005 6:00:56 GMT -5
After thinking about this post last night, I started to feel a little guilty about what I wrote. Although it's true that I do have to handle most of the insurance stuff, bills, make doctor's appointments, etc., I then got to thinking about all of the stuff the Brian does do for me, Jason, my family, etc. So . . . if I sounded complainy about my hubby, I didn't really mean to come off like that . . . but I can relate to having to be the one to just take over certain things so they get done!!
Jessie
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Post by mom2nicole on Aug 17, 2005 8:58:49 GMT -5
Chris, my husband is the same way about the pain. If it comes to causing Nicole one ounce of pain he can not do it or hear it. I tell him that somethings have to be done for her own good but he can't stand it. He just wants to hit anyone that causes her pain. He feels her pain I think literally, the first time she ran 104 fever and I ask him to hold her while I ran to his sisters for motrin, He said he couldn't because he was going to throw up. I guess I don't understand that just like he doesn't understand my feelings. Michelle
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