Pil downplaying dc disabilities

[elliejjtiny]

I wrote a long post but then I touched the wrong part of the screen and it vanished.

Basically my pil are criticising me for taking my dc to special needs groups, learning makaton etc. I tend not to tell them about what we are doing but dc will tell them and I can't really stop them. They seem to think that these groups/activities are for children with the severest of disabilities and they think I'm totally over reacting to take my dc, who don't have profound disabilities but are not exactly mild either. For example 3 of my dc get dla/pip including my youngest who gets high rate care and the dwp wouldn't give them that lightly. Pil think I deliberately encourage my youngest to not sleep so we get the higher rate but who would do that? I would cheerfully have him go down to the middle rate or even nothing at all in exchange for sleep.

It doesn't help that they seem to be stuck in the era when having a disabled child was shameful. They ignored all the professional advice to get dh assessed for autism and think that me trying to understand my dc needs and work out why they are upset is pandering to them. They seem to think it's funny that my 10 year old dc goes to activities run by the national deaf children society when he isn't profoundly deaf. He loves going and he is deaf to the point where he wears hearing aids. If the national deaf children society said he wasn't deaf enough to go then I would be fine with that and not go but he definitely qualifies.

I'd go no contact but the dc adore them and would be devastated. Sometimes I don't know whether I should tell them more and try to educate them or tell them nothing as I'm doing at the moment.

Ignore PIL and carry on as you are. It sounds like you have tried to educate them, so I wouldn’t waste your limited energy on trying to change them.

You sound like an incredible mother who is doing her best to ensure her children have access to every provision they are entitled to. I’m sorry your PIL aren’t as supportive as they should be, but it’s a reflection on them. They buried their heads in the sand with their own son, and now they see you being proactive and supportive. You’re holding up a huge mirror to them and they don’t like it.

I had a relative say some dismissive things to me about my DS (he’s 4, non verbal on the ASD Pathway and has melatonin) and it hurt so much, until I told her to keep her firmly that I do what’s best for me and my family and to keep her negative opinions to herself - maybe say something like that and don’t waste anymore energy trying to explain to them.

Hi, I'm sorry to jump on your post but I have read through so many threads and just don't know who to ask.
I can some what relate to your post.
Firstly, from reading your post you sound like an absolute brilliant mammy and you are doing right by your children. Shrug everyone else's opinions and actions off and keep doing you.
Secondly, so I put a claim in for my son in June, I heard back last week he was refused. Today I rang to ask for them to send another letter with the reasons as I've lost the original. My son wears two hearing aids, he has mild to moderate hearing loss and requires two aids all day every day. I have been advised to ask for a MR. My son's hearing loss has always been something we have got used to and adapted to. We watch telly with subtitles, my other children know not to shout so loud when sitting next to him. He is eight and I won't let him play out with other children his age as I am too worried. I haven't claimed earlier as like I said, it's something we've always dealt with but after being told we should have claimed years ago I thought I would. But now I have been refused, I feel very disheartened for him.
I think my question is, you mentioned you have children on DLA and mention your child wears two aids. Do you receive for your child who wears aids?
Sorry for the massive message, but after months of reading threads, I think I'm finally offloading all my frustration! X

@LeosMam2015 DLA forms have to be written in a specific way. If you didn’t use the Cerebra guide and National Deaf Children’s Society leaflet, it would be helpful to look at them. It sounds like you may not have worded things in the right way. For example, “I won't let him play out with other children his age as I am too worried.” Needs to be “DS needs constant close supervision when outdoors because his hearing loss means he is not aware of all danger and we cannot verbally warn him, so we have to physically intervene to prevent him being hurt.” (Or whatever is appropriate to DS’s needs.)

Thank you everyone. @LeosMam2015 yes, my son with the hearing aids gets dla. He gets middle rate care and low rate mobility. He has other problems too though including moderate learning disability. I agree with @YellowRosesWithRedTips that the words you use are really important. The cerebra guide is brilliant and the national deaf children society have some good advice too.