Parents of SEN kids,do people avoid you too?

[Jennybeans401]

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?

We don't see her that often, I've lived at least 2 hours drive from her house since I was 20, but it's not really feasible to go NC. My DF has dementia and I have a DSis I'm close to who still lives with mum. And she's my mum, I'll miss her when she's gone, even if she can be really horrible

So far as ASC is concerned, I think many (if not most) NT parents have convinced themselves that it’s poor parenting that causes our DC’s problems. So it makes sense to avoid us and our slack discipline! Unsolicited advice I’ve received includes that DS needs “a good hiding” and also that I’ve “ruined” him. One parent started giving DS a pep talk about needing to learn to be brave when he with dithering over a climbing frame. I explained that he was dyspraxic and just got an eye roll - I really wonder if they all think it’s nonsense or a fantasy of the parents’ making. I wish it bloody was.

Yes it is the loneliest I have ever been, my only solace is SEND support groups and online where I don't feel like a social leper because of my children's diagnosis. It's really hard.
I also can't work at the moment so no break. I can't maintain normal friendships.

I think we are at cross purposes. I wasn't referring to the post that you seem to think I was. I was referring to a post where someone was complaining about a child with physical disabilities and how the parent of an able child felt it wasn't fair that some time was given over to that disabled child for inclusion. Safeguarding is a different matter obviously but I never saw the post you mention so can't really comment on it.

I haven't because I don't have kids with SEND but I have been told that this has happened to some close friends. 😡

Did you mean to be so rude?

I have lots of parent acquaintances both locally and online who have children in specialist schools. I have never heard of one that has a PTA. The most likely school - the local, pretty large, generic/MLD LEA school, doesn't have one - that has a fairly small area it takes from because it's quite catch-all.

DS school mates come from up to an hour away. It was the same in his last school.

People don't actively avoid us as such, but then again, nobody is rushing to come and see us at home either.

Overall, our family and friends are pretty good at being inclusive or at least have the best intentions.

My two children attended mainstream primary - two years apart. My second child had 1:1 support. The elder child was invited to all the class parties. You could count on one hand the number of invites my younger child received. The parents from my elder child's class were friendly but I was more or less ignored by the parents in my younger child's class. I cared about this for quite a long time. No sleepovers, no babysitting (even from friends or family). In the end you concentrate on what matters but you do lose something of yourself along the way.

Yes and not just as dc.
My eldest is 20 now and nobody wants to know him, he's so lonely.
At least we have each other.

I had a friend with a (undiagnosed) ND child, they were in total denial about it so child wasn't getting necessary help. Ended up being pretty violent towards other friends dc so we had to put some distance there. Our dc are much smaller so they were very at risk. It breaks my heart for the child that they are preventing from getting help, I have been around neurodiversity all my life and I'm very happy to make adjustments but can't put my own dc in danger because they want to pretend there's no issue.

I have one child that doesn't know how to play with others, so doesn't have any friends at school. I haven't really got friendly with any of the parents despite trying. He was invited to a few whole of class parties last year, but they will probably be stopping this year as they are older and tend to do smaller things. I dread him not being invited at all.

My other one is more outwardly social. There have been multiple times across the years where he has had friends and/or parents have been friends with me and we are suddenly dropped. Mostly I don't know why, so could be that they just don't like me. Definitely also clear occasions when it was him having a meltdown or acting in a way that doesn't seem age appropriate and suddenly we are shunned.

I can't wait for them to be out of primary, where I can at least avoid other parents at drop offs and they can organise seeing their friends by themselves. Friends will always be welcome here, even if mine aren't at other houses.

On the flip side, I was probably the asshole when I lost touch with someone who's child didn't sleep, so they often cancelled at the last minute. It is hard to keep being cancelled on and having to come up with different last minute plans and I have kids that don't do well with change. In hindsight, I should have persisted more as that parent definitely has bigger struggles than me.

Yes.. but I think it’s more do to with the fact that I’m also autistic and socially awkward.

My son is now an adult. He’s severely autistic with SLD and challenging behaviour. When he was little we used to socialise a fair bit but always at home as we never had people to watch him so we could go out. Friends have never avoided us but we gradually stopped seeing people as we just could never do anything. He’s now living in a residential placement but we’ve been so used to doing nothing and going nowhere for over 20 years it’s hard to start now! So no not experienced people avoiding us .

I have never heard of a PTA at a SEND school.

There was a PTA at one of DD’s schools. Another ran a support group for parents.

How do you feel diagnosis would protect your child from the impact of their child’s undiagnosed disability?

@Ohthatsabitshit the child would possibly be receiving treatment and certainly extra assistance in an educational setting which would make a difference. As it stands they're just having to be physically removed by the parents after the fact, who then behave as if nothing has happened. I can't have my children around that violence, I know others who have already come to the same decision.

This post is so sad. I have a son with possible SEN. He’s still young at the moment.. Maybe a meet up/s could come from this post so that people who are feeling isolated.

This is such a sad thread, we have a long way to go as a society, I am trying to educate myself but I must admit I’ve not invited one of DS friends over yet for a play date as I’m concerned I wouldn’t know how to support him if he had a meltdown. I’m worried I would do some damage by saying the wrong thing or he might hurt himself or DS.
Should I just invite him?

There really isn’t any “treatment” for nd and educational support is based on need not diagnostics. Given these facts how does the dx actually protect YOUR child? My point really is that you are focusing on your perception that “it’s the parents handling the disability wrong” is the problem, but the truth is you can’t cope with this disability.

Yes, we do find this but I wonder if it's less malice / not wanting to be associated with disabled children and more other parents don't know how to react?

One example could be their kids want a big party at a crowded place and instead of asking the family with the child with SEN whether they would like to come, they assume they can't cope. Another example is they find, particularly as DC get older, less common ground... I bumped into an old mum friend the other day (both sets of DC KS2 age) and her children are going to clubs, learning languages, playing sport and musical instruments, mine (who I'm very proud of) are minimally/ non verbal and one still in nappies. It's worlds apart and makes people uncomfortable even if it shouldn't. Although she did ask all about my DC, I have been in situations where people don't know what to say, make their excuses and leave.

@Ohthatsabitshit the parents are so much in denial that rather than accept any kind of assistance, the dc changes school. Less than 10 years old and already on their 3rd. How can need be assessed?

There are of course treatments for various types of ND, play therapy being one.

yes and it is lonely. It's one of the reasons why i spend so much time on MN. i 'joke' that I get most of my social interaction here- but it's not a joke really.

As DS1 has gotten older his differences with his peers are more noticeable. The last time he was invited to a party was about 18 months ago- it was an activity that he could not really do at all and it caused him to be shunned from his peer group really. (he was distraught at not being able to do it and although he took himself off to cry on his own so as not to 'spoil it' for the birthday boy this did not really work.

My own parents refuse to ever look after the Dcs, even for a few hours if I am in a fix. DFather was actually a teacher in a special school so you would think he'd be able to cope but he says he wont.

God i'd love a secret SEN mum club.

I contacted our SENCO because they obviously (GDPR) do not tell who is a SEN kid to say that I was happy to be identified to any of the other mothers / fathers if they wanted to get together and share support etc. Nothing happened about that.

TBH DS1's so obviously autistic that people will know (people often ask me if he is as it's pretty obvious). I was fucking annoyed once though when one of the cool mums told me with a laugh that the kids in his class call it 'doing a [his name] ' when he has issues or problems.

yes invite him. If the mother is concerned she might say or else ask to stay for a bit. It is likely to mean the world to the kid. Depending on how things are you could ask the parent if there is any activity you should avoid and see if it triggers a conversation about what to expect.

@MollyRover I know a lot of ND children and multiple schools is very common and NOT a lazy option. Play therapy isn’t routinely offered or available in our area and I don’t think would be any sort of “cure” for the child. If you genuinely think that’s all it takes I think you’ve massively underestimated what the issues could be and how long it takes to gain a meaningful dx and how pitiful the support is. I think you can’t help this family and your attitudes might make things considerably harder for them. They are what causes the aching loneliness for so many of us who have children born different.