A
female
age
51-59,
anonymous
writes:Hello aunts and unclesHere goes!I've been with my hub for 12 years and pretty much can stay it's been a good marriage! When we met we both had 2 children each from previous marriages and decided almost 8 years ago to have our own child together. About 3 weeks after giving birth to our daughter we realised something wasn't quite right with her and sadly she was diagnosed with a disability, it's not life threatening thankfully but it is debilitating for her and means more care than a normal child would need. We always knew life wasn't going to be easy as but as responsible adults we decided that we both needed to step up to the plate and do the right thing by her and the other children and make it work for everyone, we both have careers so we juggled it around and now have a constant parent at home with her (all of them) but because of this it means virtually no "us" time, add to that both sets of in-laws live in different countries, both only children, and friends really limited to work friends, we have no support network aside from the school my child attends (normal mainstream). We are both really really tired because our daughter has to be looked after in the night several times too. Sadly none of us can afford to give up work.Up to 2 years ago we used to love those secrect 20 mins in bed together when she slept in, live for those weekends(once or twice a year) one of the parents would come over and baby sit (she won't stay with anyone but us and our parents and gets very distressed if we try for some reason) but something changed in my husband, he almost like stopped making the effort.... I suppose I totally swept it under the carpet and pretended everything was ok until last year our daughter randomly said why didn't we love each other anymore.... We were both flabbergasted, we spoke anout it after and got counselling and decided to make a go of things and keep trying but for him it didn't last and he was back to sleeping all the time and being angry at what life had dealt him.About 3 months ago we travelled to my parents in Italy and had a wonderful week there were things were like old times and we had fun and made love it was like old us, we come back to the UK and he's miserable again, I'd had enough a few weeks ago and had a chat and said I wanted a trial separation, he cried like a baby and said that's not what he wants and he loves me and will do what ever I want to make it work, then I see slowly he's slipping back in to his old ways again and it puts a damper on the whole house! The final straw was last night we had the chance to be alone for 2 hours and he didn't want to do anything but watch telly I was heartbroken, whilst I would have loved sex I would have equally loved a cuddle and to talk but he must won't let me in.We've seen a GP and he's not depressed (tired but not depressed), we simply don't have time to be having affairs, and there's no chance of moving to the in-laws countries where they've gone to retire, so what next? Do I stay and hope things get better or leave him ? It's been 2 years now and I don't want to live with someone that just seems to be my housemate, when I talk to him about it he says I'll change I'm tired I'm sorry.... Well I'm bloody tired too!
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female
reader, So_Very_Confused  +, writes (4 June 2014):
 I have a disabled adult child... and yes having a special needs child can seriously impact on a relationship...
the stress of day to day is wearing him out (and you)
you need respite care on a regular basis and daughter will have to learn to cope... start by finding a caregiver that she likes as a person and have them over in the afternoons to help with dinner prep and kid time... give you some time to yourself... perhaps an older teen or college student that has time and an interest in special ed would be happy to earn a few dollars in the afternoon...doing stuff while you are home but that gives you some fee emotional time...
and yes find out what's available professionally for respite care.... it's done here for full time care givers of disabled children and adults as we recognize caregiver burnout.... which is what you guys have going on.
A
reader, anonymous, writes (4 June 2014): I agree with WiseOwle, it’s about receiving the suitable and additional support that will enable you to navigate through your situation. It depends on the age of your child and the type of disability that they have. Most boroughs/counties in the UK have a disability partnership that can signpost you or advise you about the local services in the area that may offer respite for your family and child. The government has recently under gone changes to the Children’s and families Act that encourage support for things such as Direct payments that offer flexibility and financial support to how you would like to plan care for your child to suit your family lifestyle. Please look into this as it is available to your family. Contact your local authority about support with a care plan package. This may relieve the stress bought upon your family. I understand that having a child with a disability creates a lifestyle change but once its managed and positive attitudes and adjustments are made long term it will be positive for everyone.
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A
male
reader, olderthandirt  +, writes (4 June 2014):
 The "added" stress of having a "special child" probably has affected boh of you.However, you can't just get all ballistic and run away because you don't feel all warm and cuddly anymore...time does that to ALL relationships.
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A
reader, anonymous, writes (4 June 2014): You're going to have to incorporate some help into your lives.
There is no question about it. You can't handle this between only the two of you. You will have to manage your budget to have someone come in, at least once or twice a week.
The child will be distressed; but what if she has to stay over-night in a hospital, or one of you do? Like any other child, she has to be taught how to deal with outsiders.
She will start to blame herself, if she is intelligent enough to sense you are having marital problems. You are all boxed-in together, over-compensating out of guilt.
The child has special needs, but she is a child all the same. You don't have to be martyrs because of her disabilities. I strongly recommend you find yourselves a support-group for parents with children who are disabled; or with special needs. You need the counseling and support. You also need a baby-sitter. There are retired nurses and nursing students who can use the extra money. All you need to do is screen them carefully. Don't assume you can't afford it, if you haven't tried.
Go online and seek social programs designed to help families of disabled children, and offer free family counseling. It may take some research; but you're not alone.
Here in the States, kids have summer camp for disabled children. There is daycare, schools, and a wide range of options to help them enjoy everything children should enjoy. I'm sure the UK has their equivalent. You just haven't sought any help; feeling it means you're bailing out, or giving up. You can only take so much. It doesn't mean you are bad parents. You're exhausted. Why are you living so isolated? Seek some help!
Your marriage and your family is worth the trouble.
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