Special Needs

DD

This is such a sensitive issue, and I'm starting to think I'm only offending you w/ my post.

 


Maybe I'll try again later.  Hope you all have a great day. 

Re: DD

  • You are very sweet!   And thanks again for being so comforting (all ready! Even though I haven't even posted my issue yet!!)

     

    Our situation is basically such that H has muscular dystrophy.  He can do a lot of things and can function completely on his own....but a lot of times he's not very fast-acting or graceful while he's going about it.  We've come up with all sorts of innovations for having him participate w/ baby ... all theoretical of course....

     

     

    But just this morning I read a post on another board about the father staying in the hospital overnight during the time right after delivery.  He can't do this I don't think.  I was wondering if any of you had experience w/ special needs dads in delivery.  We've talked to the gyn about delivery room 'furniture' but md is so different in everyone, we're not certain she has a good grasp of what he needs.  

     

    I was really just wanting to hash out some details w/ someone who may know more than we do....to give myself a little peace of mind.  H is so psyched up to be a dad and is going to make a wonderful one.  It just panics me when I start thinking about the limitations he is going to face.  He might not be there when she's born.  Yikes :(

     

     

    Some of you might wonder after reading this....we know H's genetic history w/ the md.  We did not test our daughter.  He didn't have any symptoms until he was in his twenties and decided his childhood was happier not knowing what lay ahead.  :) 

  • I don't think anyone could be offended by this! ?:)

    Lots of dads don't spend the night in the hospital. ?It is cramped and hard to sleep there and lots have other obligations at home (older kids, pets, work, etc). ?But I bet if you talk to your hospital they'd be able to tell you if they can make the right kinds of?accommodations. ??

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  • I'm sorry you are facing this. But, I can tell you that my husband didn't stay with me when I delivered. I was a single mom when I had my oldest son; dad wasn't in the picture so I was alone at night in the hospital. When I had my twins, the hospital didn't have completely private rooms and he had to stay at our house since I had a roomate the first night.  We also had my family that came from another state and stayed at our house so he needed to be home for them.  When I had my youngest, he went home after I got settled in my room.  My c-section was at 1 am.  He slept for a bit and stayed during the day in the hospital and went home at night and slept.  We also had my family come again for a bit.

    By law, ADA, the hospital needs to provide the accomidations that your husband needs to be there for you and your daughter.

  • Can you contact a social worker at the hospital that you're?delivering?at? The doctors and the nurses will be solely focused on you and your DD, but a social worker will focus on the family as a whole.

    I'm sure they can?accommodate?you. If nothing else, it would be a good idea to give them a heads up about your unique situation.

    And feel free to post here anytime you need to. We are a wonderfully supportive, inclusive group of ladies.

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  • PMQ:   He has limb girdle muscular dystrophy.  The classic disease has a variety of onset times...but usually affects rotator cuff/ hip flexor areas hardest.  Proximal limb muscles next.  Progressively (although slowly) to the distal limbs.  They don't include involuntary -heart, diaphram, the real killers- muscles in the prognosis at all....but have no real data as to whether they can eventually be expected to be affected.

     

    H's main dystrophies are in his lower back muscles and shoulders/biceps.  When he was 22, his first sign of any trouble was a weaker right bicep in the gym.  He's 34 now....and still walks just fine, but has balance troubles due to the weakening of the lower back.  Makes it harder for him to go up stairs b/c he just can't keep himself balanced on the one foot while stepping up with the other.  He also doesn't stand up from seats of standard heights without a hand or something super-sturdy to hoist himself up with.   He lifts heavy objects with his sides (hard to picture I know...but he uses the obliques instead of the back or upper legs).

     

    I would be happy to go into even more detail with you....I'm sure this is a book by now!  I'm full of info on it....and no-one was really available for him/his family/or me to give the good, bad, and ugly details.  We've all just learned as we went.  Not all together a bad way to go, but I really do love to commiserate. 

     

    When do you get results from the testing?

     

  • Ditto contacting the hospital social worker. ?The hospital does have to provide *reasonable* accommodations for him, but even that is at their discretion as to what is reasonable.?

    Good luck and have fun!?

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