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Special needs mommys. How do you cope?

Some days he cries all day. He's in pain. There is nothing to be done. He just cries and cries and cries and there is nothing I can do about it. My head hurts my heart hurts and my daughter doesn't know what to do. He has another MRI tomorrow, if I were to take him to the hospital right now they'd be like "why are you here?". It's always something. I feel like I wake up in the morning anxious to go back to sleep, just waisting time until another day ends. I can't make him happy and if I don't try I feel like I'm a terrible person. How do you do it?

Right now it's him, but if it weren't it'd be her. They are both physically handicap and have chronic pain. I guess I should be grateful today that I'm not getting double teamed.

Answer Question
 
Anonymous

Asked by Anonymous at 12:12 PM on Jan. 13, 2011 in General Parenting

Answers (9)
  • do you ever get breaks? my son has autism and for the first 2 years of his life he would just scream all day and i could never figure out what he wanted and it was extremely hard. sometimes i dont even know how im still alive, i think we just trudge on because we dont have a choice.... also lots of vodka ;) (im jk about that part)
    pookipoo

    Answer by pookipoo at 12:15 PM on Jan. 13, 2011

  • I don't get real breaks. I am divorced from their father and so he takes them a day or two a month. If it becomes too much for him he calls me to come pick them up... and hour away. I'm constantly anxious. I don't know I'm just having a really bad day.
    Anonymous

    Comment by Anonymous (original poster) at 12:17 PM on Jan. 13, 2011

  • You need a break, honey. I know how hard it is to admit it to yourself, especially when no one seems to understand your babies like you do, but for your health (mental and phsical ) you need to get some help. There are great counselors out there who can teach you coping mechanisms, and there are church groups and paernting groups that will watch special needs kids for you for a little while. Even an hour to get your hair cut helps, and is very theraputic. It sounds like Daddy is living on another planet and you need to get him more involed as well. Force him to take the kids if he won't any other way, and don't go back to get them until you have had some restful time alone.
    Robbiesmommy83

    Answer by Robbiesmommy83 at 12:22 PM on Jan. 13, 2011

  • Call your pediatrician and see if there are any local support groups. You do need a break and you need someone to talk to that has been in your shoes. GL
    aheuszel

    Answer by aheuszel at 12:43 PM on Jan. 13, 2011

  • I will try and keep these things in mind. Pediatrician is basically useless. All he does is send them to the hospital because their needs are outside his scope of practice and it scares him. They even get sent in when they have a cold, because he's afraid it might be something worse. "Daddy" is pretty useless too. Since this is anon, I have no need to hide the fact that he's too busy indulging in his transvestite fantasies since we've divorced to care about another person than himself. I appreciate the thoughtful responses. I just feel like I am drowning. I AM remarried, since September, but I've turned my pillar of strength into a ball of mush too. He's been everything for me and he's so wonderful... yet he just started text messaging me about how depressed he is. It's so unlike him. I don't know how to be there for him, or the kids, I can't even be here for myself.
    Anonymous

    Comment by Anonymous (original poster) at 12:47 PM on Jan. 13, 2011

  • Find a new pediatrician, one that has worked with other children that have your children's needs. You shouldn't have a dr that is afraid to care for your children. Ask him if he knows anyone or ask the hospital.

    Your husband now, he is probably just so depressed seeing you like this. Don't give up yet.
    aheuszel

    Answer by aheuszel at 12:53 PM on Jan. 13, 2011

  • Is there any way you could have a nurse or respite care worker come every once in a while and give you a break? I would also check out support groups, maybe they would have some ideas of places that could help you, or where you could turn for help. Not to mention getting support from other parents who are dealing with special needs and know what it is like. good luck!
    MizLee

    Answer by MizLee at 1:17 PM on Jan. 13, 2011

  • Not sure where you live, but every state has a program for handicapped individuals to help care for their needs. In NC, it's called CAP - I'm not sure what it's called in other states but they will provide a one on one worker for a handicapped child to work on specific goals, and there are also respite hours to give parents a break. If you can't find out about it in your state, I will find out what it is if you will tell me what state you live in.
    I'm sorry for what you are going through. My 13 year old has moderate/severe autism and was an incredible handful most days, and I remember not knowing how I was going to get through the day, much less the next month, year, etc.
    missanc

    Answer by missanc at 1:18 PM on Jan. 13, 2011

  • Oh, doll, I have walked a mile in your shoes, & they suck sometimes. Definitely search around for a better pediatrician- I've gone through 2 in my DD's 3 years. I finally found one who isn't scared to treat her & isn't afraid to be honest with me. Do try & find someone to watch the kids for a while, even if it's just an hour a day. It's amazing the difference that can make for your outlook! You come back feeling recharged, even if all you did was watch tv. A good place to start looking would be the local social services office- they should have a list of sitters or organizations that can help you. And as for your DH, he's probably just hating seeing you upset & stressed all the time. Once you find a sitter you trust, try spending an hour a week just spending time with him- DF & I walk the dog together & talk. It's nice to get some one on one time again! Hugs, doll, PM me if you like!

    KA91

    Answer by KA91 at 1:58 PM on Jan. 13, 2011

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