How would you handle this???

Question

I have a five month old daughter who has been diagnosed as having torticollis and brachial plexus palsy. This pretty much means that her head tilts very bad to the left and she has partial paralysis of her left arm due to nerve damage sustained during birth. It is very obvious to anyone that sees her that she cannot hold her head straight and that she has been behind on gross/fine motor skills because of this. However, she is a very beautiful baby and is so smart. My problem is not with people asking why she holds her head that way or anything. My problem is that her father does not want anyone knowing that his daughter has a "disability". I think that if people ask that I should be allowed to tell them that she has this birth injury and that with physical therapy she will regain/compensate a lot of what she lost. He gets mad at me for telling anyone about it (even family). My question is, what would you do? Should I tell people (if asked) or should I keep quiet?

Answer 1

Just say "God made my baby a little special"  

Answer 2

Honestly I have no advice for you because it's your marriage and only you know the dynamics and how to have a peaceful relationship.  All I can say is that I would tell if asked and I would be open about it because it's not the 18th century, we are not n**i's, disability is a fact of life and doesn't mean we are lesser beings or have a poor quality of life etc etc.  This may be hard for your husband and he needs to deal, I understand that - but this condition is part of who your daughter is and she should be accepted wholly and completely for who she is.  I know it takes time for some people, I know he may be a wonderful man just coming to terms with something like this - but really, she's perfect and she'll be a stronger person who'll make you both so proud for how she adapts so easily to something some people (like him presently) can't.  So anyway, I would encourage you to stand your ground but be sensitive to his hurts and fears over this, if you can. ♥

Answer 3

personally i wouldnt go vouleenteering the information, but if you are asked then it is only courteous to have some sort of reply, preferably the truth.  its not like you are telling the whole world, just polietely answering a question

Answer 4

He sounds embarrassed and it seems as though he feels he is somehow to blame for her disability, like he did something wrong or there is something wrong with him/you or the both of you.  He needs to get over this.

Answer 5

it is hard admitting your child has a disability and men often find it even harder. my daughter has Turner syndrome and for yrs i only let close family and close friends know. Not because i was ashamed of her (far from it) just that i'd not use the name of the condition cos if you read up on it or google a lot of the info is so wrong. I did not want anyone forming their own view of my baby based on wrong info. Plus the fact that Turner syndrome causes infertility i felt that was very personal info that she should know 1st and choose who she tells IF she even wishes too.

I simply told people she had a growth problem, which is not a lie as the main feature of TS is stunted growth, she was born weighing 5lb 15oz and was just 9lb 12 by 6 months so quite obvious to others something was not quite "right".

My daughter is 11yr old now and she knows she has TS and how it affects her, i still don't tell many the name of her condition as it's more her buisness who she tells, All her friends obviously realise she's very small for her age, she has growth hormone injections every day and has told most that she has them to help her grow, they think she's brave as she does her own injections. Recently she started on estrogen treatment in the form of HRT patches, she was going on a school trip for 5 days she told her friend the patches were another form of "growing medicine" which is right in ways just instead of height they help her develop b*****s and wider hips etc.

my daughters dad used to just say "she's fine don't worry" when she was a baby. Even now he finds it harder to talk about her "problems"..

if your little girls problems are going to be obvious as she grows it's maybe best to be upfront as people may make their own assumptions. It's still early days just now and you are both still coming to terms with the fact your beautiful little girl is a little different. believe me it does get easier coping with it. I do think though at least grandparents should know, When my daughter was diagnosed at birth only very close family knew,(our parents siblings ) and 2 friends.  

Answer 6

i agree with you. you never know how someone can assist you or may have been through a similar situation. plus being able to talk about it helps you to cope as well.  your husband acts like he's embarrassed, when actually he is the embarrassment.

when she does something remarkable, he'll be grinning from ear to ear.