Page 7 | Parents of SEN kids,do people avoid you too?

Jennybeans401 · 2023-09-26T05:17:44+00:00

I have three dcs and all of them have SEN. Over the years I noticed some friends and (not all) family avoid me and our family due to this. All my dcs are quiet, kind and polite dcs. It's almost like people think they might "catch" autism! I see how despite Inclusion a lot of people still ostracise many who are autistic or have a disability. Have you experienced this?

oakleaffy · 29/09/2023 06:54

Ohthatsabitshit · 29/09/2023 00:33

I’ll be honest @oakleaffy there’s still a lot of pressure to accept residential care and very little understanding of who should be part of that discussion or when it is appropriate to have it. People have been asking me what will happen when dh and I die since our child was in very early primary. Even if I die a good ten years earlier than my mother/grandmother/great grandmother dh has many decades to decide what he wants to do.

I don’t think someone who doesn’t have this life could possibly understand all the exhausting emotions you experience.

It must be very difficult- Mum’s friends had a son who needed checking several times a night
He was a campaigner for disabled access and for benches to be provided for people to sit on as he got older- (he was wheelchair dependent to get about.)
His parents were a United team so it helped with his overnight care.
He wasn’t expected to live very long ( a few years) due to his condition, but he lived to early middle age, and had a good life.
No one should say to a parent “ What will happen to your child when you die?!”

It’s not like the parents haven’t thought about it.

reallyworriedjobhunter · 29/09/2023 06:58

100 per cent. I have 3 DCs with SEN and it's very very lonely. It does tell you a lot about who people really are though.

Gingernut24 · 03/11/2023 08:42

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BookishBabe · 03/11/2023 08:53

Family do avoid us.
I think it's more they can't cope and don't enjoy spending time with my DSs.
Family have told me not to visit again until they can behave themselves. Its been a year and they are exactly the same, autistic, which isn't going to change soon 🤷🏻‍♀️
But then I'm sure Family act like I don't make an effort.

CoffeeWithCheese · 03/11/2023 10:44

Pleasegivemeyourwisdom · 27/09/2023 14:56

In primary school, my autistic son was the only child not invited to a full-class party. He was musical; quirky, well behaved - just not a priority to anyone. How could a mum not invite him? Just him?

worse still we live in a street where children were going out of the gates with their presents to attend this party.

Same and it started from Reception as DD2 had a fairly significant speech delay and generally off-balance gait (she's severely dyspraxic and it affected her speech motor planning as well). They had a parents of X class FB group they intentionally excluded us from, and they'd hand out birthday party invites in front of DD2 and openly snub her.

In the end the kids picked up on the parents and it tipped over into bullying meaning we were basically hounded out of the school. It was most definitely targeted, intentional and driven by the parents who would pull their kids away when they saw them talking to DD.

Just to pre-empt any stereotypes - DD2 is incredibly well behaved, kind beyond words, funny and absolutely an incredible sweetheart - she's just... her (and bloody fabulous at being her). I am biased, but everyone says she's an absolute sweetie and she would be mortified at the very idea of ever upsetting anyone or making them anything less than happy.

CoffeeWithCheese · 03/11/2023 10:55

oakleaffy · 29/09/2023 06:54

It must be very difficult- Mum’s friends had a son who needed checking several times a night
He was a campaigner for disabled access and for benches to be provided for people to sit on as he got older- (he was wheelchair dependent to get about.)
His parents were a United team so it helped with his overnight care.
He wasn’t expected to live very long ( a few years) due to his condition, but he lived to early middle age, and had a good life.
No one should say to a parent “ What will happen to your child when you die?!”

It’s not like the parents haven’t thought about it.

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I work with adults with LD and I will comment that, "Let's get as much information gathered and known to us now so that if anything happens and we need to step in with additional support - we're not starting with nothing known and we've got everything that YOU want us to know about your child".

The hardest ones (and the ones that get me the most angry) are those families with now fairly elderly parents who have been supporting their child their entire life, generally below the radar of many support services and just getting on with it - and I just want to shake a system that's not given them support until things are getting to a point they're starting to struggle to cope (and it's usually the physical things that are causing the issues first). They make me so angry at a system that is set up only to step in when the shit is hitting the fan in an appropriate level of brown-smelliness.

Generally though when I go visit families they're absolutely relieved to have a professional who is closer to "getting it" than many are - as a parent of kids with SEN and an openly autistic adult myself - I may have made a couple of mothers teary when they've apologised for pushing for things and I've told them not to apologise because they just want the best for their child! (I hate the mother blaming bullshit)

Fionaville · 03/11/2023 11:21

I don't know if people avoided us or we avoided people, but we stopped socialising when our SEN boy was about 2 (he's a young adult now) apart from extended family, but even that was fraught at times.
There were times when we felt the loss of not having gatherings with friends and their kids. I remember sitting in a pub beer garden once and seeing a big group of friends (husbands and wives) all sat together laughing while their kids all played together nicely on the park. It got to me a bit because we couldn't have that.
We socialise as a family more now that he is older. Everyone loves him, he's so polite and he gets everyone up dancing at social events. And I don't have the constant stress of kids coming to tell me that he's said this or done that. I don't have to spend my time hovering over him.
We had about 13 years of being 'just us' which looking back does make me feel a bit sad. If anything though it did strengthen our bond as a couple and as a family unit. We don't need other people around us to be happy and have a good time. But when we want it, its there. We've found new friends and built our own community.
I feel for everyone living in isolation. My advice is to try and find a better bunch of people to surround yourselves with. They are out there.