Going at it alone--a preemie parent.

[molly419]

My daughter is now six years old, and was a 25 weeker. Many of you know our story...

She has had more than her fair share of medical issues, developmental delays, illnesses. We are greatly blessed to have her with us, but she does have last complications due to such prematurity.

My husband is in denial. With everything. I had to fight with him to get her into much needed speech, PT, OT when she was a child. I still do, as he doesn't think she still needs OT once a week and hates that we have to pay $15 a visit (she sill can not write her name). He did not think that she needed to have an IEP at school, though she has developmental delays and today I found out that she failed her hearing test and most likely will need hearing aids.

I call to tell him, and he just blows me off and the test results. Claiming that she can hear just fine. I feel like I have no one who will listen to me and support me when obviously I am scared, concerned and unsure about her future.

I have tried to tell him many times that he needs to be their for me emotionally, but it like talking to a wall. Any suggestions? I *need* his support.

[jamie w]

I am so sorry for the troubles you are having. It is hard enough to have a special needs child but to throw in a spouse who is unsupportive is unimaginable. My daughter was not a preemie but was diagnosed with CP very early on in her life. My husband and I both ended up in counseling. We went separately. I think it would be great if your DH would go but even if he won't I really recommend it for you. It helped me to work past so much and learn how to get what I need from DH and also how to deal with it when he can't or won't provide the support I need. He doesn't have a lot of input about Anna's therapies and medical decisions. He leaves it all up to me but is not resistant to any of it. We kind of have the agreement now that I will make the decisions but if he doesn't like them he has no room to gripe about it because he was not really in on the decision making so much. He just doesn't really have much to say about it. It makes you feel as if you are carrying the weight of the world on your shoulders and it is exhausting in so many ways! You are doing right for your daughter and you have to do those things for her which she cannot do for herself. (((HUGS))) It is so hard to worry about the future of a "normal" child but even so much harder for special needs kids.

[muddmomma2]

(((HUGS)))!

[joker]

Oh Molly, I'm so sorry that you are not getting the support you need from your husband. Big hugs. Have you thought about maybe the two of you getting some counseling? Sometimes it helps to have the third person there to moderate.

[kdreher]

I wish I had the answer for you...sometimes I am in the same boat. Michael's father and I are seperated and as far as his medical issues (which have been very few) but even just trips to pedi, staying home from work due to illness, overnight hospital stay for RSV, etc..I've done it ALONE.

Michael's father will be the first to say that drs are crooks, they just want our money, that Michael didn't need a helmet and so on. IMO it's the manly side of him just being a turd and wanting that perfect child. I am lucky, Michael has not had many illnesses and aside from his helmet for plagiocephaly there hasn't been anything major.....until now. It may be that Michael needs to wear hearing aids on both years. Testing showed that he had a mild-moderate permanent hearing loss in right ear, now (9 mos later) testing shows he has a high frequency hearing loss in both ears. He is not saying many words, but he does understand what I ask him to do etc. Dad's first reaction is he doesn't need them, he's not deaf, etc.

YOu know what I don't care what his ego says, I will do what is right/best for my son. I don't care what he has to wear, etc. I also pointed out to dad that would he rather us not do anything to help his hearing/speech and let it go and then the kid has to have speech therapy, is behind his peers, etc. He gets it but not totally.

So, I really have no advice other than make the decisions you need to. If you have to do the medical stuff alone..do it. Dad didn't handle anything well from when Michael was born...so in a sense I"m used to it. The deterioration of our marriage is not due to Michael...his father has the issues that he needs to figure out. I'm really sorry you are going through this...but, sadly you are not alone.

Jamie, you said it perfectly and that's how I handle it with a non-involved spouse.

[kara]

I struggle, too. My hubby has a hard time dixcerning what is sensory and what is behavioral. Because he isn't really involved in OT he doesn't understand and he can't identify. He works and can't take off for our weekly OT appointments, but it'd be nice if he'd read a book about what's going on. It'd be easier on all of us. He ribs me for being too lenient or spoiling her, when in reality, I know how to deal with her better.

But we also have an agreement that if he isn't going to be up to speed on what's going on, then I get to make the decisions. Decisions about therapy, decisions about discipline, etc. But yeah, it would be nice for it not to be that way.

I like Jaime's idea of counseling, but then you are probably looking at another co-pay. Maybe that would be enough to make him support you. Either you support me, or I will PAY a counselor to provide it. Hang in there....

[jamie w]

I was able to go through my employer's EAP (employee assistance program) and went for free. If you work outside the home I highly advise checking and seeing if this type of thing exists where you work. It saved me $50 copay per visit. I could not have done it otherwise...we are already drowning in medical debt!

[jacobkaden]

I would definitely recommend some couples counselling if you can manage it financially. I remember reading early on that the divorce rate is a lot higher for parents with children that have special needs. Counselling definitely saved and strengthened our marriage. DH is a SAHD, so sometimes it is me that needs some "subtle" and "not so subtle" reminding of the stresses he is under managing Jacob's care and the household:). Interesting, I am also the one that tends to be more in denial, whereas DH is not - maybe because as the primary caregiver, you see everything "up close"?

[jamie w]

Molly,
Just checking on on you and wanted to see if any of our ideas have helped? I hope you can find some way to get him on board soon!

[hannahsmom]

Hi, Molly! So glad to see you again. I thought about you when I was pregnant with #2 - how is your little boy doing? I think you are a great preemie mom. My husband also tends to blow things off, especially when I was pregnant with both babies. I'm sorry to hear that your hubby is less than supportive :(