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?

Yes absolutely.

It's hard and it hurts.

I genuinely don't think people get the difficulties of day to day life and either think I'm flaky or making it up!

I'm part of a Secret SEN mum club, entry by word of mouth in the playground. It's kept me together at times. And there's always either cake or booze, depending on the timing of get togethers.

Three of my closest friends have SEN kids also;we're all friends with each other;I find mixing with other parents with SEN children helps;my nephew on my hubby's side and my niece on my side have SEN also so it's easier mixing with my SIL's.

I was just thinking this the other day. DC's primary school friends' mums give me a breezy wave now, at best, since DC's SEN has become more evident at secondary school and the wheels have very clearly come off in terms of tracking a successful trajectory.
Former school gate buddies don't ask "How's DC?" when we meet in the local shop, even if I ask how their DC are getting on.
I try to take it in my stride.

I do however have SEN mum friends who are the real‐est, most empathetic and funny women, if a bit exhausted.

I experienced this for the first time last week I think. My DD is nearly 3 and awaiting assessment for ASD and we've just joined a toddler dance class where all the other kids are able to calmly follow instructions. My DD LOVES the group but very much does her own thing and I follow her around closely to make sure she doesn't do anything too outlandish (she's not violent at all but has no personal boundaries whatsoever and the energy of a pack of huskies/poor coordination). Been desperately trying to make small talk /even eye contact with the other mums and I've been very very blanked by everyone. A toddler group at a church hall has been the same story. I can't bear the thought that parents are looking at my beautiful little girl and ruling us out as people to even acknowledge.

Never really thought about it but possibly, my mum has my brothers kid’s regularly but never has mine ever and I’ve known this is the reason.

Yes, it’s incredibly sad and isolating. Lots of people keep their distance. Friends and family, many of whom have absolutely no understanding or awareness of how difficult things are for us, and seemingly no willingness or desire to try. I don’t see them in the same way as I used to as I’m so hurt by it all. We do have some lovely friends though.

Yes, family who I thought would be there have been utterly disappointing apart from my mum and dad (who I thought would be the opposite!), but my friends have been incredible and I've found a few SEN mums and dads. But I think I'm very lucky to have had such an understanding circle, it's rare

Yes... lots of lost friends... but over time some new ones with shared experience have appeared, and there have been kind people along the way. Some family amazing... others not so much.

Maybe because I had a similar experience when I was very ill (that abandonment was the most upsetting and shocking) that I was more prepared when it happened again with disabled children.

I have grown a very thick skin (although painful getting there) and see the world very differently now, but I think that this is a good thing ultimately.

What do people mean, the wheels falling off when the kids get to secondary? Is this pre-diagnosis or post? Or is it because the differences between SEN kids and others kids are more noticeable at this age?

I ask because DS has just started secondary. He has ADHD and autism as well as vision impairment. There is support from kids for his vision impairment but they know nothing about his SEN.

Absolutely.

My youngest very happy, sweet tween has very profound SN (bum wiping, non verbal). Her older siblings are NT.

I have experienced actual recoil mainly from older DC friends parents who were very friendly (around our older DC) until they met our youngest DC 🙄

Also a PIL who, like a PP parent, made the fault lie with the child rather than the. "oh I can't possibly visit because DC doesn't like me" and making it entirely about them and how sad it is for them🙄 we're low contact with them now mainly because their attitude was just maddening. Our family are all shite apart from my DM.

It certainly sorts the wheat from the chaff friends wise. One friend that has stuck around is just the most wonderful human. I couldn't ask for a more supportive wonderful friend. Shame she lives hundreds of miles away 😢 my only friend.

I have no friends and no family nearby. It is very lonely.

Yep.
Even those who do stay close say the wrong things alot. 'What do you mean he's sensitive to that noise? He's not got a lot of autism has he?'
'He's awkward isn't he?' Nah, he's autistic.
No one ever asks about his appointments, his progress (which according to them is too slow), his interests, he's the only child in my side of the family and I know, for a fact, he'd be treated differently if he was NT.
No one will babysit him, he's so placid and well behaved and I have to book medical and dentist appointments during school hours. Let's hope I don't have an emergency in the school holidays!

Our kids are both NT. There are a number of friends of theirs with ADHD & Autism. My nephew is also autistic. Mostly they are all grand to play together and I’m generally happy to have people.
I guess some SEN children are very challenging to look after and others it’s just small/simple adaptations that are needed. One friend of my eldest’s we usually invite alone as she finds lots of people too much. When we were having a bowling birthday party we knew she might find tough we gave her the offer of joining that or having a separate day where we went to the cinema, which worked super well as DD got to celebrate her birthday twice. A friend of my youngest really needs to know what we will do in advance and can’t deal with things changing. He does best if there is a group and a choice that each child can pick one of several activities we share in advance so he knows what will be on offer and chooses before he comes what he will do and in what order. He always comes for Halloween, Easter & Christmas craft things we do. We also have play dates to soft play or the park where he will know what he can do in advance. Neighbours youngest is autistic/non verbal and she requires a fair bit of supervision as she loves to explore with liquids so will have oil and shampoo and squash bottles etc out and poured all over left to her own devices. My younger one is great friends with her big sister. I sometimes find it really hard to figure out activities she can join in with but generally if we all do baking together or some painting they have fun. Honestly think any kids where they just have some differences that need a bit of adaptation it’s pretty crap if they are being left out. On the other hand a friends son who has ADHD & is autistic can be super aggressive and even though he’s never been at all physically violent he shouts and screams when he is agitated & he also can be blunt to the point of being rude and quite upsetting (telling kids they are fat or really bad at something or stupid that he hates their new dress and it’s ugly etc). My 7 year old is quite intimidated by him and I’m less willing to have him round to the house because I feel like my kids shouldn’t have someone that is upsetting them in their home. Even then we would never exclude him from a trip out somewhere and I’m really hopeful as he gets older he will be able to find more strategies to help him stop feeling so overwhelmed. Short of someone being violent I can’t think we’d ever just cut a kid out. Most of our group of friends think similarly. It’s really sad to see here how often people are not included.
Since I’m guessing many SEN parents will comment maybe give some suggestions for how people could be more inclusive? I felt a bit like it was rude to ask parents initially but I did as I didn’t want a whole class party less 2/3 children and people don’t seem to mind.

Dinsbun, DC1 also has ADHD, plus sensory processing and executive function issues, and has found secondary school much more challenging than primary school, as there is just so much more of everything and everyone. Transitions are a huge thing, and they're ten a penny every day. So wheels have been rattling off, little by little, and now resulting in fairly entrenched anxiety and EBSA.

Yep get this too but I no longer care about other people that don't want to spend time with us. I am lucky to have good mum friends with sen kids too and they mean the world to me. Parent/carer support groups are a great place to meet people who get it and don't judge.

"We lost friends because they refuse to accept ASD and ADHD exist (which concerns me when one is a nursery room manager)"

well yes this could be why so many of us have problems in this kind of area too!

Same. On the weekend I told her he was being assessed for autism I realised that was it for her. She kept crying at how sorry she felt for me that I had ended up with this.

Like you I find my boy to be lovely.

I haven't even had a text message from her since that day.

Look Autistic, seriously face palm.

I can't really say what has caused my social isolation since along with 3 Autistic DC I have social anxiety, a disabling chronic illness, and an abusive recently ex husband who's destroyed my self esteem, none of which are conducive to making friends. When my middle DS was young there was a significant period of time where we could only go very limited places and any outing was p When other mums were chatting outside the school at pickup I'd be trying to stop my 4 year old from hurting his toddler brother. They'd be relaxing and chatting and I'd have to rush off mid conversation to deal with DS1 hurting his brother or DS2 taking off when my attention wandered for a moment. It was too hard and too much.

I have some online friends, we actually know each other IRL too, but between the restrictions of our different disabilities and illnesses, nasty ex's, being single mums to multiple Autistic primary school age children and living a little too far apart to travel we pretty much just talk on line. I really value those friendships. They really get it, I don't think you can if you haven't been there.

Yep , you have to make friends with the mums from their SN school if you want to have any .

Yes, to the point that my best friend couldnt cope with being near my son and starting saying really judgemental and harsh things about him and I ended the friendship.

Some of the parents in our local area literally wont speak to me and actively turn their backs to me if they see me

My son now goes to a special school and the parents there are really understanding of each other and supportive when others are struggling.

This would only be possible if a) they actually lived with parents (I think around half of his school mates live in foster care) and b) anybody but us took their child to school (they all get taxis).

@drspouse my son gets the bus but I get involved with his school via pta etc .

Amazed half are in foster care , that's not usual in our school at all .

At our ss (300 ish students) only 6 parents picked up regularly.

Yes here too. <waves> They’re worried about catching the autism I think.

But you only have to read some of the choice ableist threads on here to see what people really think of SEN kids.

@floofbag PTA? No chance of that even existing!