Expecting GP’s to help with disabled grandchild? AIBU??

[ALmomma]

Basically my oldest daughter is severely disabled due to a HSV 1 virus which has had such a lasting impact on our life, I had to give up my job to look after her full time and it is taking its toll on my marriage I can’t see us being together much longer. Due to the severity of her needs DD will need lifelong care. When I was expecting her my mother always went on about how she was looking forward to being a grandparent and couldn’t wait to do things as a family, even said she would watch her so I could work etc. Ever since she’s been diagnosed with her disability she’s done a 180 and basically said she did it on her own as a single mother and basically just to get on with it. I get she is entitled to her own life, but I just don’t think it’s right morally to not bother with your grandchild who needs extra help. AIBU? Maybe I’m just being too sensitive? I don’t know. Thanks for taking the time to read.

My mum loved to harp on about all the things she would do for my children, and what a great help she was going to be. She would tell anyone who would listen about all the help she was going to give me.

She has met my oldest child once. She has never met my youngest. There hasn't been a convenient time, apparently. I haven't pushed her on it because it's totally expected. I knew she didn't mean it, I just nodded and smiled.

Some people are just like this. Love to think of themselves as Florence Nightingale and want to big themselves up to everyone else, but don't put their money where their mouth is.

So sorry you're going through a tough time, OP.

@ALmomma

It’s more the emotional side of things, I’m struggling with the diagnosis. The childcare I can understand, but she doesn’t actually come round to see her or phone to see how she is, or how things are in general. I just couldn’t imagine my daughter struggling with something like that and not dropping in to see how things are.

That's horrible. I couldn't imagine not being there for my child either. Is it early days? Doesn't excuse the behaviour, but if it is she might be struggling with her grandchild being disabled and might end up being supportive. My ILs aren't accepting of my DD and DS SEN, but I never expected support or acceptance from them in any way, so quiet different.

Do you think they don't understand?

Even if your mum is too elderly/ infirm to help in practical ways she could give emotional support. I don’t know the age of your mother but it’s just possible she’s of the generation who feels there is something shameful in having a child with a disability. I know it seems alien to most people but this was a thing not so long ago ( think Call the Midwife when the thalidomide affected baby was born)
What other support do you have? If there is a local parent and child group you could both attend ( playgroup ?) that might help you. Can your health visitor or GP suggest something?
If this is your mother’s nature I don’t think you’re going to change her. I can’t ever imagine doing this to my daughter.

It is disappointing that your DM doesn't want to do more, but I suspect your expectations were not realistic. Bouncing a healthy baby on her knee or showing off a toddler at the park are what your DM probably envisioned. Taking on significant
long term caring responsibilities for a very disabled child is an entirely different situation, and she is making clear that she can't commit to that.

I wonder if more of your disappointment should be directed at your DH? Your DD had two parents, and if he is failing to pull his weight, it is not your DM's job to fill that gap.

Your DF sounds like an arse.

Was she previously emotionally supportive?

This sounds so hard, OP, but it's not a "moral issue" that someone else - even your own mother - doesn't step up to look after your child. I'm not saying don't judge her, I'm saying that you have unrealistic expectations.

The disability could be a red herring here, I think lots of people are excited to become gps, but then they don't enjoy it as much as they expected. My mum was like this, very keen to babysit, but did it a few times and said never again. And my dc is quite easy to look after, in the sense they have no additional needs and are fairly well behaved. That's fine though.

Childcare is one thing, not trying to support you emotionally is a bit less excusable.

You need to reach out to the other mums in a similar situation - with children with disabilities. They will have seen and heard it all before and will become your tribe. Please do this as they will help you - you need them and they need you. 💕

I think you need to off load to a counsellor. You have a lot of emotions going on and nobody able to listen properly due to their own stuff. It would help to see a clearer way forward and perhaps introduce support groups, etc.

This is not uncommon in GPs and family, maybe they're scared or overwhelmed by the responsibility.
But, so are you & your DH, but you don't have a choice they do.
As other posters have said you need to reach out to other parents in similar situations. That's where you get your emotional support, they may not be able to babysit, but they know what you are going through and raise each other's spirits in the process.
Speak to your GP to arrange some respite - a couple of hours can make all the difference to a family.
You may have already been in contact with Social Services, but they too should be able to point you in certain directions & work getting that respite in place
You don't ask, you don't get. I thought I didn't need respite, but I was wrong, my body needed it, and so did my child.
Keep your chin up, you're doing your best.

I knew a couple who worked in Education and with children with SEN and they were shocked when their third child was born with a rare condition. Perhaps she doesn’t understand or feel confident I helping.

People react differently . Have you asked for support. Maybe you are looking very capable at present. Don’t be frightened to ask for support.
Sit down and talk to her. If she isn’t able to support you look and see if your local college is training people in childcare ask if you can be considered for placement. Believe me you will teach more than you learn. I did when I supported a child with Cerebral Palsy and I have never forgotten her even though it was a long time ago.

Thats really sad, I'd help my DS and Dil as much as possible in that situation. It sounds like she only wants an able bodied grandchild which is awful - a grandchild is a grandchild no matter what is "wrong" with them.

I have a disabled non verbal dd, hyperactive and epileptic. She's an adult now, but my parents never spent a minute alone with her. If I needed the loo I'd have to take her in with me as my mother just couldn't cope with her. She said she didn't know what dd was going to do next but, to be fair, neither did I . But she was my child and my responsibility and my mother just wasn't equal to the job. It's disappointing and it's sad, but it's how it is for many of us with disabled children. We are our children's 'experrs' and even Gps find it daunting.

Experts

Id help if she were my granddaughter but can understand that it might be a bit much for some people.

It takes a village and all that.... Apart from when you have a child with SN and then it's all down to the parents. It is sad that those who probably need the help the most for a bit of respite are probably the least likely to get it.

Do you have help from Social Services? If not, ask for a full care assessment under section 17 Children Act 1989 immediately - and don't take no for an answer, they have an absolute duty to do the assessment.

“ And my father basically told me ‘not to bring everyone else’s mood down with me because I’m having a shit time of it’ ”

That phrase jumped out at me. I appreciate it can’t be easy, but maybe they are finding it difficult to support you - find it too emotionally draining for whatever reason.

Agree with TheYear
Just because your DH can't cope and I suspect you fear being left as a single parent, it suddenly doesn't become your mum's responsibility.
I wouldn't want to provide practical support either. "Should want to". Ridiculous. 50% of the care is up to her father.
Emotional support, yes.

I’m really sorry you are having such a tough time. I have a Dd with disabilities and we don’t get any support with her care from family. It is hard to accept but me and DH just manage amongst ourselves now. I would really recommend as other people have mentioned finding parents of children who have similar disabilities or care needs and talking to them. In my experience people without disabled kids mean well but just don’t ‘get it’. Finding a group of other parents who just know how you feel and what you are going through really helped me feel less alone. They will provide you with the emotional support you need and probably practical ways to get what you need to support your child. Look into respite options, get a social services and community continuing care assessment and see if they can offer any kind of care package. You really need your DH on your side too, if he isn’t pulling his weight he needs to start. I really hope things improve for you soon.

It sounds like she’s disappointed that her picture perfect family hasn’t worked out as expected, thus her role as grandmother has changed. It obviously hasn’t in reality, you still need her, but because the rewards won’t be the same for her she’s decided to opt out completely.

Are there any other associations locally you could lean on?

What was your mother like before the diagnosis?

OP there are a lot of dismissive comments here about your entirely valid emotions. You can be disappointed that your Mum isn’t being supportive. You can be disgusted about your father’s dismissive comments. You can be hurt by your DHs lack of ability to react it this. You can have a whole gamut of negative emotions around your daughter’s horrible experiences, emotions that are entirely valid. You can deal with those emotions and you can move to a place of acceptance of what an unexpectedly shit thing has happened in your life and how unexpectedly people have been absolutely shit in their reaction to it. It is heartbreaking having to deal with all of this but it is absolutely clear from your post that while you resent the people who have stood back and are leaving you in the lurch to fend for this situation you unlike others are absolutely willing to take the actions that this situation requires from you. You clearly have a real strength of character and integrity and that will stand to you in all of this tough situation.