my ds has SEN but sometimes im genuinely ashamed

[staydazzling]

of his behaviour! i do and i feel terrible ds is 6 and has suspected asd adhd and dyspraxia, but can easily pass for NT with friends/aquaintances iyswim. some behaviour he can control some he can't , but being his mum I get the brunt of his meltdowns I already have an 8 year old is aspergers type asd, so live is far from easy but elder ds is fairly placid. But today like many other days he went running around the playground like a whirlwind was annoyed that it took 10 mins to get out the playground and then slapping hitting shouting at me as he wasn't pleased at me telling him off, its so embarrassing ive said to him before does he see any other kids doing that cuz I don't, I can feel the judgement and sometimes I feel ashamed. am I the only SEN mum who feels like this? i feel like it's an important topic as society shames mothers for voicing these ideas and SEN mothers are even more marginalized, I feel terrible but need to offload its so isolating.

No you aren't. I was frequently ashamed/embarrassed when D'S was young.

No, of course you are not alone in feeling like this, far from it. And that includes the guilt about feeling it! We are hard-wired to want to be perceived to be "doing well" as parents, and when our SEN children misbehave publicly it's excruciating. Others don't see the SEN, just the behaviour, and it's impossible not to feel judged and embarrassed sometimes. Try and keep hold of the fact that you know why he is behaving the way he is, you know you are doing your absolute best and no amount of fantastic parenting is going to take away his SEN or the behaviour that comes with it. Other people are seeing a snapshot of your lives, and if some choose to judge based on that, it says more about their character than it does about you or your son. And more people than you think are thinking thoughts of solidarity, sympathy and admiration for you.

My ASD 16yo is cutting, suicidal and has violent unpredictable tantrums at the moment. I feel VERY judged and often humiliated, by school, by professionals by other parents. But I am trying to stay focused on what DS1 needs, and try not to take it personally when people make judgements based on too little information

not a SEN mother but I can empathise to a degree, my DS is currently under assessment and is a hurricane of a child. His first day of school he went nuts and ran off around the playground whilst I barked at him to come back in front of all these new acquaintances and I was mortified. A few years now, and he's still regarded as a 'difficult naughty child' in class. It doesn't help that he is the biggest in his class but also the youngest, so he looks much older than he is yet behaves much more immaturely than his classmates. It's exhausting and frustrating.

You're not terrible, you're venting and it is completely natural to need to.

This is my life! I really try to have broad shoulders but people are so judgy. It often make me cry when I get to the car after pick up. I've actually recently started telling people about the SEN. Everyone just thinks you're a really shit parent though. I know that surprising few people actually understand SEN, added to the fact they're insecure and desperate for their children and themselves to fit in. Its pretty much how kids operated when I was at my school myself....don't associate with the 'wierd people'. It's not nice to realise people think of you and your family as those people!!
No solutions for you but I've found being on forums and going to odd support group thing helps your own mental health.

Please know that everyone is not judging you, some will feel nothing but sympathy, empathy and understanding of your situation. And they won't all be parents of SEN children either, I'm not but would just feel sympathy for someone doing their best. I can't speak for everyone obviously, just wanted you to know people aren't all judgemental

Thanks hidingtonothing

I'm sure that's true BUT after 2.5 years no one has stuck their head above the parapet to make that known to me. ONLY other SEN mums and even not always them!

That's a fair point, I probably wouldn't make it known without some sort of 'invitation' either, just because I would worry it might come across as rude or patronising to comment. I hope you won't mind me asking this but what would you actually like people to do/say? I tend to do 'sympathetic smile if we catch each other's eye' but worried any more than that would seem pushy or intrusive when they're already stressed.

Been there, done that and got the T-shirt. Mines older now and the behaviour has changed now he's a teen but god it was mortifying at times.
Now I can spot a parent at 50 paces that's going through it and always try to give them an empathetic look, I hope it says I know where you're coming from.

big hugs greensleeves, you're doing so well I hope he gets the help he needs. Thankyou for such helpful replies.

Nope you're not alone. My teenage DD has ASD and her personal hygiene isn't the best (dandruff as hates washing/brushing hair, plaque on teeth as hates toothbrush, BO has improved recently though so small steps and all that....). I feel others will judge that she is neglected in some way, but short of holding her down to scrub her causing her enormous distress there's not much I can do than talk to her and encourage her.

Not sure @staydazzling what strategies you have learnt for ASD kids, but I know preparing my DD for change/transition helps a great deal. So I will tell her what is happening when, and I will give her a 5min warning when we'll be leaving so it's not a surprise. Might help for the park issue?

Oh I’ve been there. My DS’s behaviour is improving over time but I’ve frequently been embarrassed by his sometimes awful behaviour but more so what I felt was my inability to cope with him. I’ve been bitten (bad enough to need hospital treatment), spat at, called names, hit, grappled on the ground with him in public to stop him running into traffic and oh god the screaming. Not to mention the non meltdown incidents that are more him struggling with social norms (asking elderly people we don’t know whether they are 300 or 400 years old, how are they still alive after all this time? For example).

My coping mechanisms include blanking every single other person out. That’s taken some training mind you. If I make eye contact I’d cry and I have in the past. A lot. I’ve also stopped saying sorry to people. I mean I apologise if he’s unintentionally rude to people but I no longer apologise for his meltdowns or when he lashes out at me like I used to. What’s the point? Strangers get to tut and shake their heads at my piss poor parenting and move on with their lives. They don’t need an apology.

In answer to the 'what would you like others to do?'

Honestly

Invite me and my child over for a cuppa and and play with NO judgement when we get there. Being a mum of a SEN child is probably the loneliest I've ever been.

In answer to the 'what would you like others to do?'

I spent years ages chasing my bolting DC around and into school. The best help was from people who asked in a non-stressful moment what they could do next time and then when DC kicked off someone would magically appear and take the other DC away, or block off all exits or whatever. No judgement, just the help I'D said I needed. Someone jumping in for the first time mid meltdown probably would have got a mouthful or more likely made me cry.

Mingo that’s a really unhelpful response.

for you OP. It must be so hard. I hope that you’d be reassured to hear that if I saw you, there’d be no judgement. Just sympathy.

minger nothing like kicking another woman when she's down eh?

I have felt like this about mine. They have asd and whilst I understand their behaviour, it is at times very difficult to cope with especially in public.

Ds1 was screaming in Ikea because his phone ran out of charge and his brother's phone hadn't. He's 14 and over six foot tall. Literally everyone was staring open mouthed. I hugged him and told him that he wasn't having a meltdown over this.
But they can't always help it.
Ring The National Autistic Society's helpline. It's a bit of a wait sometimes but they're really supportive and have ideas. Also I wonder if you've been on the Barnado's cygnet course for autism? We're going in January. Also children's services and CAMHS may be useful. Children's services are meant to be quicker in replying. Because we only got the CAMHS appointment because his behaviour got really extreme.
Passing as normal is exhausting and difficult. He might not be able to keep it up.
We keep saying it's been a bad phase, but to be honest it's not a phase because it's been lasting for years. Ds1 is falling between services and we have no help. I really understand how you feel. It's so isolating as the stuff they do, like the aggression and some of the hygiene issues no one else understands do they? Ds1 is medicated for add, no hyperactivity, it has really helped. Worth looking into.

Not helpful at all Mingo.

Honestly, OP, there are days where I feel that if autism was an actual person then I would gladly kick that person very hard in the face.

It's so difficult when you see other kids behaving the way NT kids should behave and meanwhile yours is acting like a rabid honey badger. So many times I've had to bite back from snapping at DS and asking him in sheer frustration "why can't you just act normal!?" I've never said it out loud but Christ I've been close to it.

In the calmer moments, I remind myself that it's not his fault. He lashes out because he can't understand whatever it is that he's feeling and can't explain it to me so his frustration/fear/anger turns outwards and becomes physical, he directs it at me because I'm safe, he knows I won't reject him for it, and I try to remember that it's as hard for him as it is for me. Doesn't make it any easier at the time but it is what it is.

People don't always understand. I've had people who really should know better tell me that I can cure him with the right diet/these supplements/this snake oil, they imply its laziness/bad parenting not to try these things and any continuation of the ASD is then my fault for not parenting him properly.

Do you go to any support groups? We joined a local one and they do lots for the members like carer support, education sessions, themed Q&A workshops with various experts (e.g., sleep, anger management, social skills, etc), days out for the kids, NT sibling support, and so on. I usually take the DC to their play sessions in the school holidays, they hire local venues and attractions for the exclusive use of the group and it's amazing. I have never felt judged when I'm there and when DS does have a meltdown, no one looks down on us. I highly recommend seeing what's groups are in your local area.

I totally get you. It’s utterly mortifying. My DS is 9 and dyspraxic and is sometimes utterly gobsmacking in his behaviours. Spitting, screaming, flapping, hitting . It’s so embarrassing . I was in tears on Saturday when an attempt to take him to a mainstream class ended in him attacking and spitting at the other children. Utterly mortifying and heartbreaking when you see the look on the other people’s faces.

@EwItsAHooman you have my heartfelt thanks for making me snort with laughter - twice. First I saw your username, then I saw "rabid honey badger". If only I'd had that phrase in my mind when 16yo ds1 was having a full-on screaming meltdown in Primark a couple of weeks ago

I need this thread. My oldest DS is on universal credit having left college. He got sick of being forced to do maths and English and it made him too stressed. He has ASD and ADD and is awaiting a work capability assessment. The judgy looks when I admit he's on benefits, as if we both chose this rather than him being ok and at uni etc. His younger brother has ASD too and has terrible public meltdowns. People tut and stare and comment. Even family sometimes seem to imply I could do better by "strict discipline", "showing him who's boss" etc. The fact that I have 2 autistic children is seen as proof that it's me that's the issue by many people. Invitations to gatherings are waning as DS2 gets older and the others mature faster. And local support groups are inaccessible - I work the days they are on and have no childcare for evening events. I should add I'm a lone parent too which doubles the judginess. Sending loads of  for SEN parents.

It is hard dealing with meltdowns etc in public. I have 2 with ASD. The eldest has always been pretty placid, DS3 not so much! I've wrangled him in and out of school more times than I care to remember. I think it's natural for people to look when there's a certain amount of noise going on, I don't think they're necessarily judging you for your child having a meltdown. They'll probably see you're trying your best to deal with it and not know if offering to help will make it worse.

I was very grateful when a parent offered to make sure my DS2 went in o.k. to an event (parents weren't staying) when DS3 started having a huge meltdown in a crowded reception area, which culminated in him punching me square on the nose! Similarly when a child bolted I offered to watch the baby in the pram so the mum could run after her child.

Greensleeves, what is it about Primark!? I was in there at the weekend and DS, who bloody asked to go in to buy a Fortnite tshirt, decided "nope, fuck this". He hid inside a rack and wouldn't come out then, when I tried to reach in on one side to get him out, he dodged out of the opposite side and into the middle of another rack. Did this several more times until we reached the point where I was hissing through gritted teeth at a rack of jogging bottoms "if you do not come out of there right now then I am deleting Fortnite when we get home" while DS sat in his little polyester-walled cave beatboxing to himself and chanting YouTuber catchphrases.

Some people are taking offence to my last comment, I have no idea why.
Instead of worrying about what other people think, try get to the bottom of understanding the behaviour. It’s easier said than done. Have you had any input from OT about sensory diet? Running around a lot is a sign his proprioception needs aren’t being met. Which isn’t surprising if he’s been in a classroom all day, the lashing out is probably down to a frustration of not being able to express that or even understanding what’s bothering him.
Look at some ways you can adjust his sensory diet and communication.