How to get family to understand?

[Donthugmeimscared]

My ds (10) is currently being assessed for asd. I have put off getting help for so long as I have always been told lables are bad or he will grow out of it. I have tried for help before but as he is ok at school (he's very quiet and won't ask for help but that's it) that it just me causing it.

He has massive melt downs at home and struggled with social situations and is prone to violent rages when out and about. He hums alot and gets fidgety just before he snaps and can blow up at nothing at all.

We have since found that him wearing headphones and carrying soft toys helps. He has also been getting help at school through a chams lady with techniques to deal with his feelings. These include walking out of a room for a while so he can calm down.

The problem I'm having with this is family members are calling him rude for walking away and sitting alone for a while. That I'm encouraging him to be antisocial with the headphones/they make him look "special" and that the toys are "for babies". His siblings are very outgoing so it makes him stand out more i think.

The number of times I've been told he's just bad, take all his stuff away etc is ridiculous. I've tried that over the years and it makes no difference he still throws himself about and smashes holes in doors etc. I'm really struggling and if him wearing a pair of headphones stops him throwing himself about in the middle of a shopping centre isn't that a good thing. If a toy makes him secure is that wrong? We are trying to think up other stuff as other kids can be nasty about that one. Since we have put these things in place life has got a little easier so why are they all so anti it. I'm dreading Christmas incase he has another meltdown and they shout at him.

I know he may not have asd but he has definetly got sensory issues he hates flashing lights and loud noises. I worry myself sick about him moving to secondary school as he is already showing more signs at school like humming, rocking etc since the routine has changed so I think the whole school thing is going to be so hard for him.

Sorry gone off on a bit of a tangent.

Is there anyway of making them understand him or is he forever going to be the difficult naughty child?

They also blame me as they say he is more normal when I'm not about.

Before I even opened this I KNEW this would be what it’s about. I feel for you. But sadly, there may well be no convincing them.

All I know is that you know you’re right. You know what your child needs, you know they are wrong and that their ignorance is hurting him and therefore you will need to place a distance between you both and them.

This is the unspoken part of being a SEN parent - the people we lose along the way.

In our own case we came to realise that essentially some of my family were saying “you must do things which hurt your child or we will make you miserable. We will hurt and criticise you if you don’t damage your child because we said so.”

I feel for you. It gets better, I’m far more sure of everything now, and much stronger but also more isolated.

Sending you best wishes.

Some people are so ignorant and don't want to listen to reasons. I don't think there is much you can do but support your son if you have already tried speaking to them.

Thank you it's so hard isn't it. I've been told he will go to prison etc. All he needs is a good slap, break his things etc. Being labelled will ruin his life. It's so hard to deal with.

If they don't change what they are saying them you will eventually have to distance yourself from them. They will destroy his self esteem.

He doesn't nerd to be hearing the phrase "more normal".

You don't have to subject your child to anyone who doesn't accept him.

This Christmas might be the final one with them, if you choose your Sons wellbeing.

I have got family members that I just don't talk to about it at all anymore they are not understanding and I have been told I need to sit them on the naughty step.
So the short answer is you probably never will.
If he does turn out to have asd you will end up understanding more and have strategies to help you both and it will be easier to handle the other people that are not supportive because you will be stronger.
My DC psychiatrists said she saw a big change in me after the two years and it was the confidence that came with more understanding and the change in my child.
Good luck it's not easy .

I would stop seeing them and subjecting your son to them.

You are finding ways for him to deal with issues and coping strategies to prevent the meltdowns. It doesn’t sound like you are excusing his behaviour

you say he's being assessed. Does everyone assessed always get confirmed?
I imagine if not confirmed, he's stuck with being naughty child forever, yes, sorry. I have a bit of that (mine wasn't assessed or confirmed) but no one says prison or give him a slap, at least.

I have no idea about assessments. They have said he has sensory issues. They only say prison when he's throwing himself about on the floor. The majority of the time he is very quiet and reserved.

Getting children to walk away when it gets too much is something taught in parenting courses (like the one I did at my local Sure Start Centre), so it's not just a technique for ASD.

What i was trying to get at is they won't let him walk away. I don't know if he has asd or not but he needs help and they won't support him. May be he is just naughty I don't know all of them get punished for bad behaviour etc just his behaviour is different. May be he's just anxious all I know is he's getting big and I can't hold him anymore plus it's affecting his life.

as other kids can be nasty about that one Well the adults aren't much better!

Do you think your son acts like this out of choice? Do you think if he could he'd chose to me more like everyone else? Do they realise this outbursts are so tunnelled that anything you do whilst he's under them won't make the tiniest bit of difference?

You need a frank discussion and a few NHS leaflets and tell them they support you or you need to walk away

You know what, even if your child DIDNT have any additional issues, you’re his mum and they need to respect that what you say, goes. They don’t get to parent him or boundary him or punish him. That’s not their job. Some of this is about respect for you too.

One of the most difficult and stressful aspects of DS2's diagnosis (aged 9) was getting other people in the family to accept his additional needs.

Initially, DH was adamant that DS2 didn't need assessment (eventually the school SENCO got him on board) but is now one of DS2's strongest advocates.

The grandparents also took time to come round, but are now accepting of DS2's differences and understanding of his needs.

My mother started out insisting that our children demonstrated behaviour that she perceived as polite. Making eye contact, eating what was put in front of them, making small-talk, staying in the main room at large family gatherings etc.

I had to think of examples of things she found very stressful (e.g. driving a long distance on a motorway at night) and explain that DS2 found socialising at least as stressful as that.

We have established a compromise that he will come and greet her when she arrives, that he will come and find her and have a conversation with her at some point during her visit, and that he will come and say goodbye to her when she leaves.

That's what I'm working on with him. He doesn't like small talk and even if he calls someone he says what he needs and that's it. He's getting better at it but it's taking time.

Like above I feel for you, my son is also ASD while I have a very supportive mum my dad is very old fashioned and think it's all a load of rubbish and he needs a good clip round the ear. It's easy for me as he lives in America so I don't have to foster a relationship between them. Dad wanted to see him and I said no because he made no effort to even try to get any knowledge on ASD. If the family members aren't prepared to do the same and form negative opinions about D's I would have little to do with them. Your precious son is important and so is his self esteem. Perhaps tell family of reading material to read and websites to visit about ASD first then at least you have made an effort to help educate them about it. From one ASD mum to another keep your chin up and keep fighting for your son your doing great

Thanks so much for making me feel less alone. Its so hard and sometimes I do doubt what I'm doing especially when people say you are doing the wrong thing. He would give anything to be more like people at his school. He lives a very lonely life as he just doesn't fit in. He has got a friend who has taken him under his wing but most of the time he's just left out. It's just horrible to see.

I know people who don't have special needs kids don't understand. ASD is so complicated my ds also has a lot of sensory issues, anxiety OCD, PDA, aahhh the list goes on. I completely understand how over whelming it can be. I try to focus on all the positive things my D's can do and his lovely qualities but people can be cruel and choose only the things he can't do. I focus on being his advocate, and his greatest champion. I haven't always got it right I'm only human and made mistakes but I'm determined to change the world for him to make him feel he has a place. It broke my heart when he wrote in his wishes that he wanted to be normal. What the hell is normal anyway?? Don't think anyone is we all have our own qwerks. Anyway sorry for blarting on lols. With love support and help your D's will find his way in the world don't worry

Btw my son wrote he wanted to be normal too. sorry sounded like I was having a go at you I wasnt D's wrote the same thing

I’ve not had any luck. We are now just distancing ourselves. My new saying is ‘you can’t argue with stupid’. if they really think all the research and drs are wrong, it really is just a case of a clip round the ear would take the non existant disability away then there’s just no arguing with that. It’s a shame and disappointing but you can only change your reaction to them and protect yourself and your child from the upset their attitudes will bring as much as possible.

Right on Blue.

You can't make ignorant people understand. We just distance ourselves now, it's easier.

Being called bold is a label. Asd is not a label, its more of a bunch of keys.

You have to stop listening to everyone else, get him assessed and then you can move on and deal with the facts.

Fuck everyone else.

@3luckystars

That's a great way of putting it.