Proud of mothers

[Natasha319]

I would like to say I am very proud of mothers who take care of their children with disabilities. It can be a struggle but your bravery and strength day to day encourages the world to be a better place.

[Inside]

Thank you Natasha it is so thoughtful of you to say that and very much appreciated I’m sure by the parents who see your message. 💝

[Beansprout1]

thank you Natasha. We love our special children so much and want the best for them, it’s so hard when we don’t get the support from social services.

[Bluewatersixtysix]

Hi Natasha,

well said, I agree, and think we should all be proud of ourselves as parents with children/adults living with a disability. Let's give ourselves a big clap!

[TPrider]

I have to say here, after this lovely but sexist comment. You have no idea what struggling is until you try raising 4 kids on your own, two of them disabled and you are a man dealing with women in every department! To make matters even more challenging, I am a gay man.

The amount of times over the last 35+ years I have had to fight for services and resources for my children and seen mothers just get it. I've had my opinions and statements ignored and on too many occasions been told that men just 'don't get it like mothers do' from women who don't even know me!

In a meeting with senior social workers in December, all three agree they have ignored statements from fathers or asked for extra checks they would not have asked for from mothers.

Yes, of course some mothers are amazing. The mother of my kids wasn't. We divorced and they had/have an amazing father

[SpeedyH in reply to TPrider]

I absolutely agree with you, TPrider. Whilst I'm sure the comment was well meaning it is very naive and ill-considered. Of course there are as many different types of carers as there are people on the planet and no one particular characteristic makes one group superior to another.

What is more of problem with the comment though, is the underlying message that 'some' children (and adults) with disabilities are a burden to be 'bravely and 'strongly' endured. The language that we use is important as it perpetuates negative perceptions of 'difference' leading to discrimination and isolation.

It seems a bit weird that the poster is 'proud' of a bunch of people they don't know. Being proud usually refers to pleasure at your own achievements, qualities, etc or those of someone you are close to. To profess pride at all carers of people with disability feels like aversive ableism to me.

[TPrider in reply to SpeedyH]

Perhaps it is OK to be proud of how a carer or for the carer themselves is proud of what they achieved despite the many difficulties they almost certainly faced fighting the system. I feel most carers have been there at some point!

It isn't bravery though. It is 'our' normal if I am permitted to use that word in this context?

Going the distance of doing everything possible certainly shows some resilience. A huge degree of patience and both physical and emotional strength.

My eldest required 24/7 care. He was also insulin dependent and had some extreme behavioural issues. He required most of my attention. Sadly, I failed quite a bit with the two who had no difficulties at all. I needed them to help out too much (never got support outside). Matt & Daisy were absolutely amazing. Every day all of us would get punched, kicked, sworn and spat at. All too often we would have to go to A&E for the eldest after he'd had a seizure and split part of himself open. It would take in excess of 8 healthy people to hold down a heavily sedated son and even then there were occasions when we just had to leave it and hope for the best. My added pressure on Matt & Daisy is that I had to remove my hearing aids at night so they were my ears. Despite being deaf I still sensed issues with the eldest when they happened at night. I feel that when a person (of any gender or orientation) is that close to someone, that certain sense is there.

My eldest daughter though, she was quite locked in. Though not as bad as her brother, her communication skills were very poor and she got over stimulated quickly. She slept a lot (thankfully) allowing the rest of us to get on with her brother.

You know what, only when the eldest moved away to be better cared for elsewhere, did we really understand how repressed all our emotions were. We had one argument after another and there were tears and more tears because after nearly 20 years it was safe to express ourselves. We couldn't do that with him at home. He picked up on it straight away and kicked off. Only at that point do we really understand what we gave up of ourselves to care for him. We wouldn't change it obviously. I will say now, quite rightly, I am shocked how we coped. Not proud of it because, sacrifices had to be made I am certainly not proud of but we did good on the whole.

A few years later my daughter, the other one with LD left home. That was after a failure of the NHS, actually, too many failures and then social care stepped in and all became a huge mess.

Even now though it is not over. They both live away but we manage their care. With the daughter we have no end of issues with social care and care providers. Everyone agrees they have abused their position over and over and, primarily because I am a man. Even early on this year I was asked what their mother thought should happen?! It never ends.

No, not proud, that is the wrong word just quanked (look that up, it's a great word)

[SpeedyH in reply to TPrider]

Quanked is indeed a wonderful word but I fear that, along with forswunk and ramfeezled, it sounds a bit dodgy nowadays!