Meltdowns, violent outbursts and an inability to see past self

Hi everyone,

I'm new here (in regards to setting up an account on here - but not new to the site). I have a thirteen year old son, with an autism diagnosis, I'm waiting on CAMHS appointment to assess for possible ADHD and ODD as he displays some characteristics that could tie in with these conditions. My son was diagnosed four years ago this month after spending five years fighting with health care professionals to take me seriously. I have - for the last year - been the only one to have any input/support in regards to my son and his needs. This has been a hard choice to make and it is one that I have made knowing that it was going to a lot more difficult, before getting easier. I've had to cut my mother and her family out of me and my son's life as they were having a toxic impact on our life's, so toxic that it could have ended a whole lot worse than it actually did. Though it's still not going great, things do "appear" to be looking better, but things don't feel right. Not yet any way. I have some professionals involved that don't seem to want to listen or take onboard what I'm saying and don't appear to be listening to me when I'm crying out for help. I've been asking for several months from these "people" to get the proper help in place to support both my son and me in a way that we both need to benefit us. Unfortunately, they have used excuse after excuse to not do this and have left it to the point that things have got extreme before sitting up and even coming close to listening. And don't start me on the communication - it's been virtually non-existent until last week, when I had to go to a certain professionals boss, not something I wanted to do, but here we are.

The last six months haven't been easy, especially. I moved to my current location six months ago to have a fresh start away from the negative people in our lives (who don't know where we are for obvious reasons). I moved here also for a mixture of other reasons, of which have been ignored when it has came to certain meetings, along with a lot of other very important information, which I've had to send in electronically. I've had to also had to constantly repeat EVERYTHING to them. I've also asked for them to put all sorts of support in place (including respite), but it's only got until now, when things are extreme circimstances that they are starting to do anything about my pleas for help. 

My biggest struggles with my son are, not listening, just walking out (it's bad enough to have to lock the door and hide all the keys so he can't get out - for his own safety), hitting - his hits are really hard these days - I have brought up all this to the relevent people and there is evidence over text and email about this, so they are definetly aware. My son is having an abundance of meltdowns lately. He gets bullied over things that he can't always help, he also struggles with verbal and non verbal communications, as a result people take him the wrong way and as a result - they end up attacking him, knowing fine well that he can't always help what comes out his mouth. This is something that I've tried so hard to work on with him, but unfortunately he isn't the worlds best listener. It's becoming increasingly harder to try and nip the meltdowns in the bud before they become full blown punching and screaming meltdowns. These have gotten so bad that a neighbour feels the need to shout abuse out their window and call him a "mongo" (pardon the m word). Said neighbour has never made an effort to come to my door to speak to me about my son, only shout abuse out into the street and cause us embaresment. 

Although I am starting to get there - extremely slowly - but surely, I need some help and advice on how I can better help my son, in a way that will help him calm down, his biggest issues just now are - going to school because of bullies, but also because he thinks it's beneath him - he's at an average level all subjects but is nat five level for computing - thats fourth year level despite being in second year. He also has issues with the Scottish weather (yes - I know eyeroll haha), he fails to understand that nobody can control the weather - not even him. He's a skateboarder rain aint good, there are no good places for him here to skateboard and constantly dictates that I need to move him to a city - we live in a rural area to get away from the big city and all the bad things that CAN come with living in a big place. He has little to now understanding of the "real world" for someone his age and struggles to understand explinations when I try to explain in a way that he will understand. He just struggles to understand in general that things can't always go his way. 

If anyone has gone through anything of a similar nature and knows what to ask for with "professionals" then that would be much appreciated.

Parents
  • Hey, my son is 9, although he was diagnosed asd aged 5, its now looking more like he has PDA which has led to the wrong way of strategies to help him cope. He has unfortunately regressed severely, but that's from separate medical issue. 

    Also the absolute pain of getting services on our side has been worth writing a book about. I honestly can't offer you advise on that. But please do start looking at PDA and other parents who have children/teens with it. It isn't actually formally diagnosed in some parts of the UK (my district lincolnshire doesnt).although several other professionals have said he definitely has it on the severe end. Learning a completely different way of wording things, reverse psychology, complete opposite to what you feel is socially normal is the way. 

    I'd be asking GP for cahms referal now as the list is rather long. Good luck and sending you strength mum xx

  • I never thought of PDA, I'm sort of familiar with the term, I do have a referral to CAMHS in but as you know, the waiting list is mental. I do have a family support worker there who has been excellent helping sort out a few other things going on in the background, she's aware of everything going on and is now focusing on trying to help me get into a good place with the wee fella. Yesterday and today have been absolutely horrendous days as we're near the highlands and have the only red weather warning in Scotland (as far as I'm aware of) in regards to Storm Babet, he's been going crazy to the point I've had to lock myself in a room to protect myself whilst he comes out his meltdowns. He's struggling to cope with not being able to get out as a result of the storm and the red weather warning. I've kept the family support worker updated on this so she can look into ways to help me manage them better.

    Thanks muchly for reminding me about PDA, I'll run it past the support worker and get her opinions on it

Reply
  • I never thought of PDA, I'm sort of familiar with the term, I do have a referral to CAMHS in but as you know, the waiting list is mental. I do have a family support worker there who has been excellent helping sort out a few other things going on in the background, she's aware of everything going on and is now focusing on trying to help me get into a good place with the wee fella. Yesterday and today have been absolutely horrendous days as we're near the highlands and have the only red weather warning in Scotland (as far as I'm aware of) in regards to Storm Babet, he's been going crazy to the point I've had to lock myself in a room to protect myself whilst he comes out his meltdowns. He's struggling to cope with not being able to get out as a result of the storm and the red weather warning. I've kept the family support worker updated on this so she can look into ways to help me manage them better.

    Thanks muchly for reminding me about PDA, I'll run it past the support worker and get her opinions on it

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