Other people's horrible attitudes towards your disabled child

[Bursarymum]

I'm just coming on here to vent because I'm so sick of feeling that people (extended family and such) talk about dd1 like she is a problem that needs to be got rid of. They act almost like she's not a person and say I should have her put into care. I find this so upsetting. Yes, she's very hard work at the moment. But she needs me and her family and I'm her best advocate. I think I would be ill if she went away from me and I didn't know what was happening to her.

I find that they seem to talk to and acknowledge my NT kids and ignore her as if she is less of a person than they are.

It's so upsetting. I'm finding that I can't even hold it together in the local shop without crying.

Couldn't read and not write something back. I'm sure your doing a fantastic job are you sure this is how your family feel or are you interpreting comments? I would maybe try a visit to GP to see if anti depressant might help you feeling tearful. Are you getting all the support you can.
I as informed by FiL over Christmas 'that you have two children' I'd to many wines to comment without swear words! My son has dx autism in laws say he's never any trouble for them. Hence they haven't had him overnight in a year yet have my dd anytime!
Take care of yourself sending flower and hugs

That's fucking awful, Bursarymum - do you have a dx, and if you do, how long has it been since you got it?

If I had my time again, in the weeks and months following dx I'd have been as ruthless as I could in stripping out of the equation all of the extended family and friends who didn't get my DC - it takes a while to come to terms with, and even longer to develop the rhino hide you need to ride it through.

Early on, two separate sets of evangelical Christians tried to tell me that God had sent me a disabled child to punish me for my sins. That didn't hurt - there's no way to take something like that seriously. But the Christian members of my family who failed to show us compassion and understanding in our time of greatest need? That hurt a lot.

Only you can know whether it's ultimately going to be worth the time and effort educating these fuckers. The way you feel right now, I wouldn't waste the mental effort on them if you can help it - a postcode's distance is what you need right now.

And these family members who talk about having their own flesh and blood 'put into care' for the crime of being disabled? Let's hope they never, ever break their hip. Or succumb to dementia, or Parkinson's.

Thank you for your replies. I am shocked to hear the nasty comments that you also have to put up with.

Yes my dd has severe autism. She was diagnosed at 2. She has had many years of ABA but is now in a special school, and, although it's a lovely school I think she is too autistic for them to be able to meet her needs. She is now a teenager and can be very difficult to manage at home and I feel that partly this is because her educational provision is not able to address her issues within the full context of her autism and her sensory issues. She also has epilepsy. I have asked the private ed psych we use to come and assess her at school to see if I can start to build a case for her to be moved to an ASD specific school. I have also started to try to adapt our home to address her sensory needs as advised by OT and actually, even having a trampoline in the garden is helping.

I'm a single parent and rely on my mum to help me out a lot. Family members have started saying she should go into care so that we don't have to think about her any more. I can't imagine anything worse tbh. I need to know what is happening to her and she cannot relay information. I also do feel that she is going through puberty (she's 13) and that she will settle down again. Her dad is pretty useless - I don't feel he particularly cares what happens to her as long as it does not affect his social life. He also ignores her social worker's requests to speak to him about what she does at his house which is really annoying.

I find it hurts less over time. My sons aren't neuro typical so it's pretty minor compared to what others face. If you can call your three year old running into a main road in the blink of the eye for fun or - well - anything that either of my boys do - minor.

It's minor in that it can all be brushed off by family. If I hear about Einstein once more....

It's not ideal but 5.5 years down my road I can't seek or accept sharing my feelings about the boys. It's very personal to me. I am totally where I need to be, I have a ten foot wall around us. It keeps the world out and us safe. It's a personal zone I don't let people in.

Maybe not healthy but I got fed up pouring out my feelings to be met with all the "he's only young, everyone's on the spectrum" you do what ever works for you.

People act like this because they simply don't know what else to do.

I can't carry all of this around so if it's not worth fighting for, don't put more energy into it.

Easier said than done

They generally haven't got a clue. I'm sure I was a bit like that pre DS, but I hope not so rude. But even my loveliest family and friends, even DSis who works in SEN, doesn't know what it is like to be the parent. It's not unkindness or maliciousness, it's just incomprehension.

Vent here, smile at them, even with a rictus smile and know you are right.

TBH? From here, you sound totally on top of the most important thing - understanding DD & her needs, and what has to change so that she can have her needs met.

What are the local ASD specialist options like round your way? Have you had a chance to check them out at all?

Aside from your mum (who I'm guessing has had been firmly in your corner since early on), is there anyone else DD genuinely needs right now apart from you? Her dad sounds like an unusually vacant waste of space - and ignoring SS is not going to work well for him.

The rest of the family? If you can cut them out or ignore them for now, life would probably be easier. They've had well over a decade to roll their sleeves up and support - they're not going to change now, and there's no reason to take any of their armchair-based prescriptions seriously.

OMG
they say I should have her put into care.

What century were these people born in? Would they like Bedlam re-opened so that they can buy tickets to go and watch?
Do they want a freak show in the circus again?

You have made the best decision for your DC that you could possibly have made which is to bring up your dc yourself.

You deserve masses of pats on the back, and all the support from your family, friends and community can give you.

Ugger your Christians - I have a picture in my head of Jesus clapping his hand to his head thinking "didn't they listen to a WORD I said?"
Well Father forgive them, because they ought to know what they are doing and are failing miserably.

Bursary an ASD specific school sounds like a great idea - private EP ditto.
Remember that the National Autistic Society have trained helpline volunteers who can help you with a case up to and including Tribunal. You ring, leave a message, and they call you back.

0808 800 4102

Good Luck Bursary
Don't let the ludicrously ignorant get you down

Sen

oh well, that is their old age sorted. in a home and forgotten about huh?

what horrible thing for them to say.

Thank you senvet and all of you for your kind words. It does help to hear when others are so unsupportive. And I am not feeling well right now. Mostly because of their attitudes about the situation.

Unfortunately I don't think anyone will give me antidepressants because I've been regarded as bipolar in the past. My current psychiatrist doesn't think the diagnosis is correct and is in the process of changing it (I agree with him). But in the meantime I doubt they will give them to me.

senvet- spot on!

Op, Im so sorry you get this, its awful isn't it? I get it too from so called family, have lost most 'friends' because of theirt comments, and even complete strangers make judgy comments too.

Its very very difficult to let it all wash over you and ignore it and just feel sorry for them and their complete thick ignorance.

Ive burst out to people before to get an education about SN, (I had a thread about comments a while back either here or on Chat), my family cant be bothered with DC so I cant be bothered with them, DCs my family.

You are a great parent and you keep on being one.

Parents of SN kids have so much more to deal with and on the whole are fantastic about it.

for all of you. and for all your children.

Despite your ignorant relatives, you sound very sorted as a parent and clued up on your daughter's needs. Is there an autism /ASD parents group near you to get support from others who know what it's like? Crying sounds like a natural reaction to people saying very hurtful things. It sounds like you need to keep these relatives at a distance